tag:blogger.com,1999:blog-85225720829678213032024-03-19T00:39:22.340-04:00Answering TTP Thrombotic Thrombocytopenic PurpuraJoin us on our journey to connect the Thrombotic Thrombocytopenic Purpura (TTP) community.
Sign up for the Answering TTP Community to attend meetings at www.AnsweringTTP.orgAnswering TTP Foundationhttp://www.blogger.com/profile/03914638934418249663noreply@blogger.comBlogger63125tag:blogger.com,1999:blog-8522572082967821303.post-14102567341196807912014-12-11T07:39:00.002-05:002014-12-11T07:42:22.105-05:00Why I am Committed to Getting Involved!<!--[if gte mso 9]><xml>
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<![endif]--><span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i>"I am
committed to getting involved in <a href="https://www.answeringttp.org/ttp-overview" target="_blank">Thrombotic Thrombocytopenic Purpura</a> (T.T.P.)
awareness because it’s a cause that is close to my heart.</i></span></span><br />
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<tr><td style="text-align: center;"><span style="font-family: Arial,Helvetica,sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFXMQW9_B2-iO5g31BU_L42Thz2lpveFrHZO7p5Cei7c-D4HqfdXpCo_h1QGiUXJjMYltmUY5APt_hwNTeM2SkOw63tn9YGX6GXXi3KAtYG0BV-1i0GQNgs6DJq_ABWo3_J58aZaAHW8Q/s1600/AudrinaRemyLAFairSummer2014.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFXMQW9_B2-iO5g31BU_L42Thz2lpveFrHZO7p5Cei7c-D4HqfdXpCo_h1QGiUXJjMYltmUY5APt_hwNTeM2SkOw63tn9YGX6GXXi3KAtYG0BV-1i0GQNgs6DJq_ABWo3_J58aZaAHW8Q/s1600/AudrinaRemyLAFairSummer2014.jpg" height="320" width="240" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial,Helvetica,sans-serif;"><i>Audrina & Remy</i></span></td></tr>
</tbody></table>
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i>
</i></span><span style="font-size: small;"><i>
</i></span></span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i>In the
span of a couple of years, I went from being blissfully unaware of <a href="https://www.answeringttp.org/ttp-overview">T.T.P</a>. to
suddenly wanting to know everything about it. This need to learn about this
rare blood disease grew when my cousin Audrina almost died from it. Her story
is one that I thought I would only read about in magazines or see on the news.
I never thought that someone I love would have to live with an incurable
disease.</i></span></span><br />
</div>
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i>
</i></span></span><br />
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<tr><td style="text-align: center;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9kYORpjyLUxsygKSq2ekhYvNjISvXPsPv5Qsvqd4eIusLvF_XBkctoMeUcRM54jL_aXv5L11w9R4Aps0KKznvL5WEn1dMDrTTonXm2ch65KBDwADGwjLqLCMYjDpfAYjVcRQPdDA3I_g/s1600/AudrinaandRemySept2014.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9kYORpjyLUxsygKSq2ekhYvNjISvXPsPv5Qsvqd4eIusLvF_XBkctoMeUcRM54jL_aXv5L11w9R4Aps0KKznvL5WEn1dMDrTTonXm2ch65KBDwADGwjLqLCMYjDpfAYjVcRQPdDA3I_g/s1600/AudrinaandRemySept2014.jpg" height="200" width="150" /></a></i></span></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i>Remy & Audrina</i></span></span></td></tr>
</tbody></table>
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i>I grew
up with my cousin Audrina, who was diagnosed with<a href="https://www.answeringttp.org/ttp-overview"> T.T.P</a>. three years ago when
she gave birth to her daughter Remy. In a way, when Audrina received her <a href="https://www.answeringttp.org/ttp-overview">T.T.P.diagnosis</a>, it was like everyone who loved her did too. We all became committed
to researching this exotic-sounding disease and trying to figure out what the
heck “purpura” was. We all united and became Audrina’s Army, a name conceived
for our team for the Annual <a href="https://www.answeringttp.org/get-involved/fundraising-initiatives/walk-answer-ttp-together">Walk to Answer TTP Together</a>, a walk dedicated to
raising global awareness and funds for <a href="https://www.answeringttp.org/our-role-impact/our-accomplishments">TTP</a>. Audrina’s battle against <a href="https://www.answeringttp.org/ttp-overview">TTP</a> has
inspired me to join in and to help the TTP community in anyway I can, but not
just once a year while walking in the Annual Walk. I want to get more involved
in different areas to help have the biggest impact I can. </i></span></span><br />
<br />
<span style="font-family: Arial,Helvetica,sans-serif;"><br /></span>
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i>
</i></span></span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i>Two
years ago, I completed my graduate degree in journalism and I devoted many
articles and media projects to Audrina and her T.T.P. journey. I was proud to
educate my classmates on this disease, and quite coincidentally, I learned<a href="https://www.blogger.com/null" name="_GoBack"></a> that a fellow classmate’s aunt also had <a href="https://www.answeringttp.org/ttp-overview">T.T.P.</a>; it was like
I was in a foreign country and I finally found someone who spoke the same
language. It’s a testament to how an affliction as rare as <a href="https://www.answeringttp.org/ttp-overview">T.T.P.</a> can still
unite groups of people – if you have the courage to talk about it.</i></span></span></div>
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<tr><td style="text-align: center;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMC0gBJlHeoQULSpYSjc1gXQVeFwpMkVFvYSNUm_If8OJtTYQTKtkZGR-T08Hb0mzsQZ-oIMm8losglzzm-GTqV2FAGYKrSDNQ8jIUnPoS_7hRH1Abw1FAuG4q14hp9bpErneVNp56zfk/s1600/AudrinasArmyTTPWalk2013.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMC0gBJlHeoQULSpYSjc1gXQVeFwpMkVFvYSNUm_If8OJtTYQTKtkZGR-T08Hb0mzsQZ-oIMm8losglzzm-GTqV2FAGYKrSDNQ8jIUnPoS_7hRH1Abw1FAuG4q14hp9bpErneVNp56zfk/s1600/AudrinasArmyTTPWalk2013.jpg" height="212" width="320" /></a></i></span></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i>Audrina's Army during their Walk to Answer TTP Together</i></span></span></td></tr>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i>Recently,
my family and I moved from sunny Southern California to even sunnier Dubai in
the United Arab Emirates. We left the day after the 2014 <a href="https://www.answeringttp.org/get-involved/fundraising-initiatives/walk-answer-ttp-together">Walk to Answer TTP Together</a> in September. Changing time zones does not mean that I changed my
views on supporting Audrina through her journey as a <a href="https://www.answeringttp.org/ttp-overview">T.T.P.</a> survivor. Nor does
it mean that I have changed my mind about getting involved with the <a href="https://www.answeringttp.org/">Answering TTP Foundation</a>. I may be on the other side of the world from the <a href="https://www.answeringttp.org/">Foundation</a>,
but I have learned that there are ways that I can still <a href="https://www.answeringttp.org/get-involved">get involved</a>! </i></span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i>No
matter who or where you are, you can still reach out and <a href="https://www.answeringttp.org/get-involved">make some kind of difference</a>!"</i></span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><i>- Laura Santana</i></span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">To find out how you can get involved to help make a difference in the lives of those affected by TTP please visit our website <a href="https://www.answeringttp.org/get-involved" target="_blank">HERE</a>. You can make a difference! <i> </i></span></span>
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<span style="font-family: Times,"Times New Roman",serif;"></span>Taryn Byrnehttp://www.blogger.com/profile/14989306224618379122noreply@blogger.com0tag:blogger.com,1999:blog-8522572082967821303.post-73510375298975621662014-11-26T09:43:00.001-05:002014-11-26T09:43:25.527-05:00Volunteering for the Volunteer Patient Speakers Bureau<div class="MsoNormal">
"On Oct 8<sup>th</sup>, 2014, Taryn, the Charitable Programs Director
of Answering TTP Foundation, approached me about an opportunity to speak with a
class of medical students regarding my experience with TTP at St. Joseph’s
hospital in London, Ontario. She mentioned that this is a new program that the
Foundation is piloting in hopes of getting patients into classrooms to help
medical professionals put a face to this rare disease and help them better
understand TTP and the patient experience.<o:p></o:p></div>
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At first, I was hesitant. I thought to myself, “is it worth
taking a day off work to travel about 4 hours in total to share my story and
answer questions students might have in half an hour’s time?” I asked one of my
coworkers their opinion about the opportunity and she helped me turn my
hesitation into excitement. She told me that by going, it would not only help
raise awareness, but it would also be a great opportunity to help medical
students get an understanding of how it affects patients and see the personal
side of it. This in turn would not only help them treat the disease, but it
might also speed the diagnosis of patients in the future should they ever come
across a patient in their careers. After hearing my co-worker out, I decided
that this was worth doing, even though it was only a brief appearance, so I
asked my boss for the day off and decided to go.<o:p></o:p></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBwbdQrigjlTrMBy3SXsoLFkvOVt0YhRLWlpOs8gP9mdYED9ARrqNgiWNX_xN16NRcgmP9oGy4Gi7B_ns4KuVzn8vYHLEQpPk4a0KLVJy9sdLaZ3gFtALev7WU_BTR98JYNruq6jdVLdg/s1600/Screen+Shot+2014-11-26+at+9.39.42+AM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBwbdQrigjlTrMBy3SXsoLFkvOVt0YhRLWlpOs8gP9mdYED9ARrqNgiWNX_xN16NRcgmP9oGy4Gi7B_ns4KuVzn8vYHLEQpPk4a0KLVJy9sdLaZ3gFtALev7WU_BTR98JYNruq6jdVLdg/s1600/Screen+Shot+2014-11-26+at+9.39.42+AM.png" height="298" width="400" /></a></div>
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On Oct 30<sup>th</sup>, Taryn picked me up and we made our
way to London, Ontario. During our ride, she further discussed this new
initiative and what they hoped this program would accomplish. She also talked
about the other programs that the Foundation has in place for patients and upcoming
intiatives, showing that this Foundation is making strides in spreading
awareness and stretching out its reach, not only across Canada, but in other
parts of the world as well. <o:p></o:p></div>
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We were a little bit early for the 3:30 class, so we went to
grab a coffee at the hospital’s Tim Horton’s and I took some time to read over
my speech. At 3:30, we met Dr. William Clark, the professor, in his classroom.
After being introduced to the approximately 25 students by Dr. Clark, I made my
way up to the podium and shared my story. A few of them asked questions, mainly
on whether I was informed properly about what my disease was and how I in turn
would explain it now. I told them that it was hard for me to understand how the
doctors explained what my disease was and confessed that it’s still hard for me
to this day, to explain what it is. After answering the questions, Taryn went
to drop off some of the brochures and pins from the foundation and thanked Dr.
Clark for allowing us to speak to his class and share my story.<o:p></o:p></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1q-F_Pm1FsBBBEvYAfAT_IdZfVGR-6lLJVWJ3pZhddFlwJgSscsIII9gApNsM-AfUwKGCcIz8rIfBE2xn9WhDLqfF7OAard2XYr_ctQ71pP-FWL_3js-jOWfFB1q9e4TFINhsjZI00B4/s1600/Screen+Shot+2014-11-26+at+9.41.13+AM.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1q-F_Pm1FsBBBEvYAfAT_IdZfVGR-6lLJVWJ3pZhddFlwJgSscsIII9gApNsM-AfUwKGCcIz8rIfBE2xn9WhDLqfF7OAard2XYr_ctQ71pP-FWL_3js-jOWfFB1q9e4TFINhsjZI00B4/s1600/Screen+Shot+2014-11-26+at+9.41.13+AM.png" height="400" width="303" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Diana Hermosa sharing her TTP experience.</td></tr>
</tbody></table>
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As I have learned since my sudden diagnosis with this rare
disease, there is still so much work that needs to be done. So much more
research is needed in order to find out what causes it, what can trigger
relapses, how to ease treatment and ultimately, find a cure. In addition,
seeing that there isn’t any other foundations dedicated to TTP there is a dire
need to further expand the Answering TTP Foundation’s reach – we need to let
hospitals, both in and outside of Canada, know that this Foundation exists so
we can partner with many more medical staff to better prepare them in caring
for TTP patients, from the time of the diagnosis until the end of their treatment.
I also hope that through alerting hospitals of this Foundation, that more
patients will be able to find this Foundation so that they can learn and
connect with others; so that they know they are not alone! They need to know
that there is a foundation that exists and that they can be part of this
community in order to get that much needed support.</div>
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<o:p></o:p></div>
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Luckily, thanks to Sydney, the Foundation’s founder, a
community for TTP patients and medical professionals exists and this Foundation
continues to do great work in supporting, educating and raising funds to fund
research. However as patients, I feel that we need to do our part in helping
this great Foundation make bigger strides in making this rare disease become
more recognized. Together, we can have our voices heard. Although it only
affects 3-4 people in 1 million, TTP deserves attention to help in finding
better treatments and a cure. <o:p></o:p></div>
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Get started to help today; make your first step by sharing
your story, whether you are a patient or supporter. Your story helps others by
showing them they are not alone." </div>
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<br /></div>
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<i><b>- Diana Hermosa</b></i><o:p></o:p></div>
Taryn Byrnehttp://www.blogger.com/profile/14989306224618379122noreply@blogger.com0tag:blogger.com,1999:blog-8522572082967821303.post-3868947582830402042014-11-19T08:10:00.001-05:002014-11-19T08:10:13.333-05:00Answering TTP Foundation Pilots an Exciting New Program!<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;">On Tuesday, October 28<sup>th</sup>, 2014, I accompanied
<a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney Kodatsky</a>, Executive Director, on a road trip to London, ON, to take part
in the Foundation’s first Volunteer Patient Speakers Bureau presentation to
medical students. This new and exciting program brings <a href="https://www.answeringttp.org/patient-stories" target="_blank">TTP patients</a> into the
classrooms of medical students to help bring awareness and a voice to TTP. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Stakeholders have been asking for this program since the
<a href="https://www.answeringttp.org/our-role-impact/our-accomplishments" target="_blank">Foundation’s inception</a>. I received directive from the <a href="https://www.answeringttp.org/our-role-impact/our-directors" target="_blank">Board of Directors</a> to
develop the program in 2014. I was fortunate to have support from <a href="https://www.answeringttp.org/our-role-impact/our-research-grants/2014-funded-grants/dr-william-clark" target="_blank">Dr. William Clark</a>, Professor of Medicine and recipient of an <a href="https://www.answeringttp.org/our-role-impact/our-research-grants" target="_blank">Answering TTP Foundation research grant</a>, who invited us into his classroom to pilot the program. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Now we had a place, next we needed a speaker. I knew that I needed
someone who was experienced, and who was comfortable telling their personal
story to strangers. Also, I needed someone who could provide me with feedback in
order to develop a training document for future patient volunteer speakers. I
knew just who to ask, the Founder of the Answering TTP Foundation, <a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney Kodatsky</a>, who is no stranger to sharing her personal TTP experience in front of
public audiences. I knew that Sydney would need limited preparation help and
that she would be able to offer me valuable feedback in regards to how a
patient can prepare. Feedback that will further the development of this program
so that we can roll out to other patient volunteers internationally!<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Sydney happily agreed and the pilot of the program was in
full motion. <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9vsFqcYhYnL3uaNKPbU17MYx-x95yOyVmVfN3gZyZ8g4-XQzirA8VzeVfi5iPpMepRNejHEYBI0LHYVnfXRK9cJbi9W6Szkc2tlG0sFdFKVgy-xum8JuSH8gLIzWPVVKUFTXmhOo38KY/s1600/Screen+Shot+2014-11-19+at+8.03.47+AM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9vsFqcYhYnL3uaNKPbU17MYx-x95yOyVmVfN3gZyZ8g4-XQzirA8VzeVfi5iPpMepRNejHEYBI0LHYVnfXRK9cJbi9W6Szkc2tlG0sFdFKVgy-xum8JuSH8gLIzWPVVKUFTXmhOo38KY/s1600/Screen+Shot+2014-11-19+at+8.03.47+AM.png" height="248" width="400" /></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We arrived at <a href="http://www.lhsc.on.ca/" target="_blank">London Health Sciences Centre</a> about 30 minutes
early so that we could get our bearings and find the conference room where the
presentation would be held. This also gave Sydney time to go over her prepared
speech before speaking to the students. <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgpnSdyhMqpdUHAReUGk3ZFXoAMzz5_6lGcqXiE6ciRSJiFNbV6IfBfV-8_U3LznJU9nHU4aqtWL9AcqZTmaTaawLQaL46j6V528JglC1pidPy6e03Qx5UPW3OmhV57CwPkBwGp92N_Ds/s1600/Screen+Shot+2014-11-19+at+8.08.15+AM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgpnSdyhMqpdUHAReUGk3ZFXoAMzz5_6lGcqXiE6ciRSJiFNbV6IfBfV-8_U3LznJU9nHU4aqtWL9AcqZTmaTaawLQaL46j6V528JglC1pidPy6e03Qx5UPW3OmhV57CwPkBwGp92N_Ds/s1600/Screen+Shot+2014-11-19+at+8.08.15+AM.png" height="281" width="320" /></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">At just after 3pm, <a href="https://www.answeringttp.org/our-role-impact/our-research-grants/2014-funded-grants/dr-william-clark" target="_blank">Dr. Clark</a> and his students, renal fellows,
invited us into the cozy conference room. As Sydney spoke, I watched as each of
the students took notes and seemed captured by Sydney telling her <a href="https://www.answeringttp.org/patient-stories" target="_blank">personal experience</a> with <a href="https://www.answeringttp.org/ttp-overview" target="_blank">TTP</a>. When she finished, <a href="https://www.answeringttp.org/our-role-impact/our-research-grants/2014-funded-grants/dr-william-clark" target="_blank">Dr. Clark</a> and his students asked
questions about everything from treatment she received, to how she felt when
diagnosed, to what had been the scariest part of her experience. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">After the presentation Sydney and I were energized about the
impact that these types of presentations can have. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Me: “How do you feel that went?”<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Sydney: “I feel like it went great. As a patient, I feel
like I was able to bring <a href="https://www.answeringttp.org/ttp-overview" target="_blank">TTP</a> out of a textbook and give it a face. I feel that
moving forward in their careers, <a href="https://www.answeringttp.org/ttp-overview" target="_blank">TTP</a> will be a diagnosis consideration when a
patient presents to them, which means a patient may be diagnosed sooner because
I took some time out of my day to share my story with these medical students.”<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Me: “How did you feel your story was received by the
students?”<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Sydney: “They seemed genuinely interested when I was
speaking and they asked thoughtful questions that I had no trouble answering.
It was great that the Dr. Clark moderated this Q&A to ensure that he
handled the more technical questions and I answered from the patient
perspective. Any patient would be able to answer their questions.”<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Me: “What are the 3 most important points you hope they took
away from your story?”<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Sydney: “1) To consider the diagnosis of <a href="https://www.answeringttp.org/ttp-overview" target="_blank">TTP</a> when
appropriate; it is still too common that patients are diagnosed too late. 2) To
understand a little bit of what it is like to receive such a rare and scary
diagnosis, so that they can more effectively treat their patients. 3) To do
what they can as doctors to support patient groups which play an important role
to support patients, educate all stakeholders and fund research.“<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I would like to thank Sydney again for accompanying me on
this pilot. I am very excited about this program and look forward to engaging
the TTP patient community to get involved, by sharing their stories in local classrooms.
This program is still in the development stages, but the <a href="http://answeringttp.org/" target="_blank">Foundation</a> hopes to
roll it out internationally in the near future! <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b>Looking to get involved with the Foundation?</b><o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Why not start by sharing your story officially with us <a href="https://www.answeringttp.org/get-involved/how-you-can-help/story-submission" target="_blank">HERE</a>
online. Every story shared is unique and helps to generate more awareness for
TTP!</span><o:p></o:p></div>
Taryn Byrnehttp://www.blogger.com/profile/14989306224618379122noreply@blogger.com0tag:blogger.com,1999:blog-8522572082967821303.post-17133258358192913242014-11-11T08:39:00.004-05:002014-11-11T08:40:44.522-05:00The 2014 Walk to Answer TTP Together Top Fundraising Team Award Goes to...<div style="text-align: center;">
<span style="color: #990000; font-size: x-large;">Team: Walking for Trevor (captain: <a href="https://www.answeringttp.org/patient-stories/kathy-downs" target="_blank">Kathy Downs</a>)</span></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9v6WvWwdBBLuGNUJx5XrDI1nJP66EKUEVm-LbbB6oAm05SSAQ4vYH-6utVKGKSGNLPuinsntQY6iIf1to8Ji_oUe-XWsIVi2SB4V3WWxqC0jTshUs8PLCwWvYKxeK5w2-Jti1szCBODE/s1600/team+Award+alone.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="318" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9v6WvWwdBBLuGNUJx5XrDI1nJP66EKUEVm-LbbB6oAm05SSAQ4vYH-6utVKGKSGNLPuinsntQY6iIf1to8Ji_oUe-XWsIVi2SB4V3WWxqC0jTshUs8PLCwWvYKxeK5w2-Jti1szCBODE/s320/team+Award+alone.png" width="320" /></a></div>
<div style="text-align: justify;">
Congratulations<span style="text-align: justify;"> to team Walking for Trevor! This team was able to raise a remarkable </span><span style="color: #990000; font-size: large; text-align: justify;">$9,565</span><span style="text-align: justify;">! Funds that will help support Foundation initiatives including TTP </span><a href="https://www.answeringttp.org/ttp-overview" style="text-align: justify;" target="_blank">education</a><span style="text-align: justify;">, </span><a href="https://www.answeringttp.org/support-programs" style="text-align: justify;" target="_blank">support</a><span style="text-align: justify;"> and funding for life-changing </span><a href="https://www.answeringttp.org/our-role-impact/our-research-grants" style="text-align: justify;" target="_blank">research</a><span style="text-align: justify;">.</span></div>
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<tr><td class="tr-caption" style="text-align: center;">Team Walking for Trevor on September 20, 2014</td></tr>
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This is Team Walking for Trevor’s third year participating
in the Walk to Answer TTP Together and <a href="http://answeringttp.blogspot.ca/2013/10/the-2013-walk-to-answer-ttp-together_9805.html" target="_blank">second consecutive year winning TopFundraising Team Award</a>! </div>
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<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsbLwFTq6YLvElmVrF4Zdq3qLbn4L9jzot0Bw9UNd5CdGcrOk6rHPE_Shhjs_LkLN39RH7m2LrQFcQPjv9760nJCfjRMA_EEZWYS1H1FJG5Rf-pD9fHU5kw-FxeN1SCjA52TQwbD5K780/s1600/photo+1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsbLwFTq6YLvElmVrF4Zdq3qLbn4L9jzot0Bw9UNd5CdGcrOk6rHPE_Shhjs_LkLN39RH7m2LrQFcQPjv9760nJCfjRMA_EEZWYS1H1FJG5Rf-pD9fHU5kw-FxeN1SCjA52TQwbD5K780/s320/photo+1.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This year's personalized prize.</td></tr>
</tbody></table>
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Way to go Team Walking for Trevor! Thank you for
your continued support and hard work at fundraising, while also helping to raise
life-saving awareness for TTP! <o:p></o:p></div>
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<br /></div>
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To see more pictures from this year's event please visit our photo book <a href="https://www.answeringttp.org/albums/2014-walk-answer-ttp-together" target="_blank">HERE</a>. </div>
Taryn Byrnehttp://www.blogger.com/profile/14989306224618379122noreply@blogger.com0tag:blogger.com,1999:blog-8522572082967821303.post-40697493941039296512014-11-11T08:39:00.003-05:002014-11-11T08:39:43.227-05:00The 2014 Walk to Answer TTP Together Top Fundraising Individual Award goes to...<div class="MsoNormal" style="text-align: center;">
<span style="font-size: x-large;"><a href="https://www.answeringttp.org/patient-stories/mina-rajan" target="_blank">MINA RAJAN</a> </span></div>
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<span style="font-size: x-large;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9RFgXl8NOhMGki4veEp6iPrzlaICcg4vNj0AvNXYr6jj__Mz_1DQUEo83vlmirtbvVNvu8poumYYAY2CQgdCmF8S3PV3eigzQYHpVSCtyigIfH6tvXwGjGZws9Mr_86ANHuJniRFmuhk/s1600/Individ+Award+alone.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="286" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9RFgXl8NOhMGki4veEp6iPrzlaICcg4vNj0AvNXYr6jj__Mz_1DQUEo83vlmirtbvVNvu8poumYYAY2CQgdCmF8S3PV3eigzQYHpVSCtyigIfH6tvXwGjGZws9Mr_86ANHuJniRFmuhk/s320/Individ+Award+alone.png" width="320" /></a></div>
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<span style="text-align: start;">Congratulations to Mina! Mina raised an incredible </span><b style="text-align: start;"><span style="color: #990000; font-size: large;">$4,150</span></b><span style="text-align: start;">! </span>Funds that will help support Foundation initiatives including TTP <a href="https://www.answeringttp.org/ttp-overview" target="_blank">education</a>, <a href="https://www.answeringttp.org/support-programs" target="_blank">support</a> and funding for life-changing <a href="https://www.answeringttp.org/our-role-impact/our-research-grants" target="_blank">research</a>.</div>
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<br /></div>
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<tr><td class="tr-caption" style="text-align: center;">Mina (middle) and a group of supporters during her 2014 Walk.</td></tr>
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<div class="MsoNormal">
<a href="http://answeringttp.blogspot.ca/2013/10/the-2013-walk-to-answer-ttp-together_29.html" target="_blank">This is Mina’s second year in a row winning the TopFundraising Individual Award! </a><o:p></o:p></div>
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<tr><td class="tr-caption" style="text-align: center;">This year's personalized prize.</td></tr>
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<br /></div>
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Did you know that above being an amazing and dedicated
fundraiser for the Foundation’s Annual <a href="https://www.answeringttp.org/get-involved/fundraising-initiatives/walk-answer-ttp-together" target="_blank">Walk to Answer TTP Together</a>, Mina is also
an active volunteer? She is a member of the Foundation’s <a href="https://www.answeringttp.org/get-involved/awareness-advocacy" target="_blank">Patient Advisory Board(PAB)</a> and an organizer of Alberta based <a href="https://www.answeringttp.org/get-help/support-programs/local-support-groups" target="_blank">support groups</a>! As a patient of this
rare disorder, Mina understands the importance of getting involved to help make
a change! <o:p></o:p></div>
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Thank you Mina for your continued support and fundraising efforts!<o:p></o:p><br />
<br />
To see more pictures from this year's event please visit our photo book <a href="https://www.answeringttp.org/albums/2014-walk-answer-ttp-together" target="_blank">HERE</a>. </div>
Taryn Byrnehttp://www.blogger.com/profile/14989306224618379122noreply@blogger.com0tag:blogger.com,1999:blog-8522572082967821303.post-71536344651353377082014-11-11T08:39:00.001-05:002014-11-11T08:51:10.448-05:00The 2014 Walk to Answer Together Spirit Award Goes to...<div style="text-align: center;">
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Congratulations to this year’s <a href="https://www.answeringttp.org/2014-walk-answer-ttp-together" target="_blank">Walk to Answer TTP Together</a>
Spirit Award winner Team Cindy Moes! This team went above and beyond to capture
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_OcBboyBBxqJVJMymZeIadoxqJSFjtzrSaqr1c8CNH-PCwFJ7gmjfatCe94OE6Brkobb3GIi1F4BZKZrDI0mjIg71x1KPIGMxfF8f7XS1qu5hGsTRMrVvcKBbiK7dn-z5MIFghehqOKY/s1600/DSCF9602.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_OcBboyBBxqJVJMymZeIadoxqJSFjtzrSaqr1c8CNH-PCwFJ7gmjfatCe94OE6Brkobb3GIi1F4BZKZrDI0mjIg71x1KPIGMxfF8f7XS1qu5hGsTRMrVvcKBbiK7dn-z5MIFghehqOKY/s400/DSCF9602.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Picture from Team: Cindy Moes</td></tr>
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We were lucky enough to speak
with team captain Melissa Angermeier before the September 20, 2014 event
because she helped us put together <a href="http://answeringttp.blogspot.ca/2014/09/what-are-you-doing-to-prep-for-your.html" target="_blank">a blog to help inspire other participantspreparation for the Walk</a>! So we knew that she was planning to go big on spirit
this year, but what this team did blew us away!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1Uq6aGk2hQ6WPCUpGtWaM3FCH-xSwzCzJPsb6pzUb2fJVC5OCNoOpKFWP1mnPMJi35jmRbNiu-a1Fi7uR7XUBBNRnE180k2HB0mxIkcoO-O0kxKyhUI8W3iVpFewTe0gHOmw9tdYgG_w/s1600/TeamCindyMoes.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1Uq6aGk2hQ6WPCUpGtWaM3FCH-xSwzCzJPsb6pzUb2fJVC5OCNoOpKFWP1mnPMJi35jmRbNiu-a1Fi7uR7XUBBNRnE180k2HB0mxIkcoO-O0kxKyhUI8W3iVpFewTe0gHOmw9tdYgG_w/s320/TeamCindyMoes.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Members of Team Cindy Moes on Walk day</td></tr>
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From their <a href="https://www.answeringttp.org/" target="_blank">Foundation</a> provided Walk
t-shirts, to red wigs, knee-highs and hand cut puzzle pieces and balloons that
lined their route, this team had it all!! We are sure that their wild and
spirited walk helped to raise an abundance of life-saving awareness for TTP in
their local of South Dakota.</div>
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This team also went above and
beyond to help raise awareness by getting the attention of a local newspaper
that published a story about TTP, <a href="https://www.answeringttp.org/" target="_blank">the Foundation</a> and the <a href="https://www.answeringttp.org/get-involved/fundraising-initiatives/walk-answer-ttp-together" target="_blank">Walk</a>!! <o:p></o:p></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNBKKrBUX5rNGqYQZgvfrXzYu6HbZpnLJMXUrol8cuAIUm6rhuK-Qpupj34poMS5Z6fQ_INgY9ruvEpYMHkW9L55RUapM4qZGZyPaK__mgdOjDkwDKtUXrtRuoJWFIH0tpqaG6fgMzhmg/s1600/IMG_20140923_172205.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNBKKrBUX5rNGqYQZgvfrXzYu6HbZpnLJMXUrol8cuAIUm6rhuK-Qpupj34poMS5Z6fQ_INgY9ruvEpYMHkW9L55RUapM4qZGZyPaK__mgdOjDkwDKtUXrtRuoJWFIH0tpqaG6fgMzhmg/s320/IMG_20140923_172205.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="https://www.answeringttp.org/articles/2014/10/03/2014-walk-answer-ttp-together-team-cindy-moes-news" target="_blank">Team Cindy Moes attracts media attention</a></td></tr>
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Amazing work Team Cindy Moes!!
Your hard work and efforts is helping to spread global life-saving awareness
and raise life-changing funds for TTP!<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0Lx_3_WctYtfT4slvw1V1QB_YRgumvXljpw9i9-g1TAdYeWjy2loseqA8HMoL6nkTVFhFjcY1kquvehzDSR5xVMUkZe4o8ylyI2rJ76Wnf72we4EEljBZMbLOH9FRruMTAEd11o1kKgc/s1600/photo+4.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0Lx_3_WctYtfT4slvw1V1QB_YRgumvXljpw9i9-g1TAdYeWjy2loseqA8HMoL6nkTVFhFjcY1kquvehzDSR5xVMUkZe4o8ylyI2rJ76Wnf72we4EEljBZMbLOH9FRruMTAEd11o1kKgc/s320/photo+4.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This year's personalized prize.</td></tr>
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To see more pictures from this year's event please visit our photo book <a href="https://www.answeringttp.org/albums/2014-walk-answer-ttp-together" target="_blank">HERE</a>. </div>
<!--EndFragment--><!--EndFragment-->Taryn Byrnehttp://www.blogger.com/profile/14989306224618379122noreply@blogger.com0tag:blogger.com,1999:blog-8522572082967821303.post-45955439890441004412014-10-23T14:22:00.001-04:002014-10-23T14:23:28.446-04:00Toronto and Virtual Support Group and Info Session - 2014<div style="text-align: justify;">
On Tuesday, October 7, 2014 <a href="https://www.answeringttp.org/" target="_blank">Answering TTP Foundation</a> held its annual <a href="https://www.answeringttp.org/get-help/support-programs/local-support-groups" target="_blank">Toronto and Virtual Support Group and Info Session</a>. This meeting was the third time the Foundation was able to integrate a virtual participation option that allowed participants from around the globe to use their telephone and computer to participate and listen in.</div>
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The Support Group and Information Session followed a simple format that engaged both in-person participants and those who joined virtually by calling in.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYyYa2OOLcsqdRzAshU3dJpqiOzgUhmU__yTxmCe99mgbo6ivMVgZoPs0XcwAsExzCRwcpI7oERItq96jVKM7HN48mxheC2S2M6pk_tnOwvBPcxQMuM5LO0bs4GXqrZdYyUgLiER4QXLY/s1600/TMA.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYyYa2OOLcsqdRzAshU3dJpqiOzgUhmU__yTxmCe99mgbo6ivMVgZoPs0XcwAsExzCRwcpI7oERItq96jVKM7HN48mxheC2S2M6pk_tnOwvBPcxQMuM5LO0bs4GXqrZdYyUgLiER4QXLY/s1600/TMA.png" height="320" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="http://answeringttp.blogspot.ca/2013/12/tma-what-does-it-mean.html" target="_blank">CLICK HERE to read our blog about TMAs. </a></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgtSyXAaewFACK3khuouxEeY7MATZYt2zpS5mT0OnkoExW1ifD3HRzOXvQR19nKOAVsF-v1b9mrsn7qvwmssRar7hIWDtF7vsAnBvF_m5QvNKy8BHKz5r7NuDh0w-xXWxxq6kcLL0Vggg/s1600/Headshot+-+2009_Cropped.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-align: justify;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgtSyXAaewFACK3khuouxEeY7MATZYt2zpS5mT0OnkoExW1ifD3HRzOXvQR19nKOAVsF-v1b9mrsn7qvwmssRar7hIWDtF7vsAnBvF_m5QvNKy8BHKz5r7NuDh0w-xXWxxq6kcLL0Vggg/s1600/Headshot+-+2009_Cropped.jpg" height="200" width="135" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dr. William Clark</td></tr>
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We owe a big thanks to <a href="http://www.ontariodoctordirectory.ca/London/Doctor-William-Foster-Clark-58291.html" target="_blank">Dr. William Clark</a> for his pre-recorded presentation regarding <a href="http://answeringttp.blogspot.ca/2013/12/tma-what-does-it-mean.html" target="_blank">Thrombotic Microangiopathy (TMA)</a>. <a href="http://www.ontariodoctordirectory.ca/London/Doctor-William-Foster-Clark-58291.html" target="_blank">Dr. William Clark</a> is a professor of Medicine at the University of Western and a Physician at the London Health Sciences Centre. Dr. Clark is actively participating in research in the area of TTP and the Foundation is excited to be co-funding his current research project entitled <a href="https://www.answeringttp.org/dr-william-clark" target="_blank">Long-Term Vascular Outcomes of Idiopathic Thrombotic Microangiopathy Treated with Plasma Exchange</a>.</div>
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Dr. Clark’s presentation was very thorough and discussed the difficulties faced by physicians when diagnosing patients with a specific <a href="http://answeringttp.blogspot.ca/2013/12/tma-what-does-it-mean.html" target="_blank">TMA</a>, as many <a href="http://answeringttp.blogspot.ca/2013/12/tma-what-does-it-mean.html" target="_blank">TMA</a>’s present similarly. He went into depth on several <a href="http://answeringttp.blogspot.ca/2013/12/tma-what-does-it-mean.html" target="_blank">TMA</a>’s and outlined the commonly used treatments for each. Participants listened to and watched the pre-recorded presentation, after which Dr. Clark was able to join in via phone to answer any questions the participants had with regards to the presentation, as well as general questions about TTP. To watch Dr. Clark’s presentation please click on the link below.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijWO03AuNrzhVfLwhRxwshCBI6teUUEgzR6WZDb10P9khbfmidJYPdNhuASiCCQWRc7ed4lMKNs2ABVs566mUKYju-TgmZwgKGqu3AJAXHwm56AM008ZMA3knD48i1dmjrEUxNWgD14jo/s1600/Screen+Shot+.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijWO03AuNrzhVfLwhRxwshCBI6teUUEgzR6WZDb10P9khbfmidJYPdNhuASiCCQWRc7ed4lMKNs2ABVs566mUKYju-TgmZwgKGqu3AJAXHwm56AM008ZMA3knD48i1dmjrEUxNWgD14jo/s1600/Screen+Shot+.png" height="193" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="http://youtu.be/MZLT-J7GjGY" target="_blank">CLICK HERE to watch the video. </a></td></tr>
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Following the presentation portion of the evening, <a href="https://www.answeringttp.org/patient-stories/diana-hermosa" target="_blank">Diana Hermosa</a>, a local patient who was able to attend in person, helped to break the ice for the breakout groups by sharing her TTP experience with everyone. Diana was diagnosed with TTP in November 2013 and has shared her personal experience with the Foundation officially; her entire story can be found <a href="https://www.answeringttp.org/patient-stories/diana-hermosa" target="_blank">HERE</a>. Thank you Diana for helping us kick off the breakout group’s − your story inspired others to <a href="https://www.answeringttp.org/get-involved/how-you-can-help/story-submission" target="_blank">share theirs</a>!</div>
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The breakout groups offered all participants, in person and virtually, a unique opportunity to share their experience with other TTP patients, supporters and nurses who participated in the evening.</div>
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<a href="https://www.answeringttp.org/our-role-impact/our-directors" target="_blank">Sherri Sullivan</a>, Vice Chair of the Foundation and Director of the Foundation’s <a href="https://www.answeringttp.org/get-involved/how-you-can-help/volunteer-opportunities" target="_blank">Patient Advisory Board (PAB)</a>, presented an update from the Foundation, which included information on the various initiatives, patient support and outreach programs the Foundation has been hard at work on. Below are a few of the exciting updates:</div>
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<li style="text-align: justify;"><span style="color: #990000;"><a href="https://www.answeringttp.org/medical-professionals" target="_blank">Medical Advisory Network (MAN)</a> </span>– has been established to provide support to other medical professionals who may have a challenging case of TTP, to allow for collaboration. </li>
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<li style="text-align: justify;"><span style="color: #990000;"><a href="https://www.answeringttp.org/understanding-ttp/resource-links/answering-ttp-foundation-educational-documents" target="_blank">Translation</a></span> - of our trusted TTP Patient and Supporter Information Brochures – in French, Italian, Portuguese, Simplified Chinese, Russian and Punjabi. English and French versions are available in hard copy free-of-charge; other languages are available for free download HERE. </li>
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<li style="text-align: justify;"><span style="color: #990000;"><a href="https://www.answeringttp.org/get-involved/how-you-can-help/story-submission" target="_blank">TTP Awareness Hats</a> </span>- have been created and are given to patients and supporters who share their stories with the Foundation officially on our website. </li>
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<li style="text-align: justify;"><span style="color: #990000;"><a href="https://www.answeringttp.org/our-role-impact/our-research-grants" target="_blank">Research</a></span> - The Foundation is currently funding 4 research grants! To date, the Foundation has committed <b><span style="color: red;">$647,879</span></b> to research grants through 2016. </li>
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She also took the opportunity to announce the Foundation’s first TTP Stakeholder Collaboration Meeting!</div>
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<span style="color: #990000;"><b>Please plan to join us in June 2015*, in Toronto, ON. The Foundation is excited to announce that plans are well underway for our first TTP Stakeholder Collaboration Meeting. This two-part event will take place on two dates* (between June 20 and June 28, 2015), with each date having a unique focus and objective. Part one of the meeting will engage physicians and research professionals to discuss best treatment practices and will open the doors for future collaboration aimed at effective TTP research. Part two will be dedicated to TTP patients, providing opportunities for feedback that will help the Foundation to develop a Comprehensive Care document. It is our hope that this meeting will help to strengthen the Foundation’s voice and community. A limited number of travel scholarships will be available to patients on a first-come, first-served basis. </b></span><i><span style="font-size: x-small;">*Exact dates to be announced. The Foundation is working to align the Stakeholder Collaboration Meeting with the International Society on Thrombosis and Haemostasis Conference.</span></i></div>
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Thank you to all who participated! </div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b>Are you looking for a TTP Support Group in your area? Why not organize one? The Foundation can help you with this and Support Groups are a great way to reach out to your local community to help meet others with TTP and their supporters! Your event doesn’t have to be a large-scale meeting; coffee shops are sometimes the best settings for the first event in an area!</b></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b>Learn how we can help you to organize a support group in your area, so that you and other TTP patients and supporters can benefit from this type of support!</b></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b>If you don’t, who will?</b></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b><a href="https://www.answeringttp.org/get-involved/how-you-can-help/organize-support-group-session" target="_blank">CLICK HERE</a> for more information. </b></span></div>
Taryn Byrnehttp://www.blogger.com/profile/14989306224618379122noreply@blogger.com0tag:blogger.com,1999:blog-8522572082967821303.post-67388480408755652162014-10-10T09:06:00.000-04:002014-10-10T10:43:00.276-04:00OIAA Golf Tournament Donates to Answering TTP Foundation<div class="MsoNormal">
<span lang="EN-US"><span style="font-family: Trebuchet MS, sans-serif;">The below post was submitted by <a href="https://www.answeringttp.org/our-role-impact/our-operations-team" target="_blank">Marie Dimech</a>, an Operational Volunteer of the Answering TTP Foundation. </span></span></div>
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<span lang="EN-US"><span style="font-family: Trebuchet MS, sans-serif;"><i>"On September 10, 2014, <a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney Kodatsky</a>, the Executive Director of the
<a href="https://www.answeringttp.org/" target="_blank">Answering TTP Foundation</a>, asked me if I would consider attending an event on
behalf of the Foundation.<o:p></o:p></i></span></span></div>
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<span lang="EN-US"><span style="font-family: Trebuchet MS, sans-serif;"><i>As a volunteer, I was flattered to be asked to represent the Foundation
at an event, but also a little apprehensive - what would be expected of me?
Would I need to make a speech in front of a crowd? These are questions that
swirled in my brain, as I have never been very comfortable speaking in public.
Sydney quickly put my worries at ease; she told me that the Foundation had been
contacted by the <span style="background: white;">President of <a href="http://www.oiaa.com/" target="_blank">the Ontario Insurance Adjuster Association</a> (“OIAA”) in the Niagara Region and requested our
presence at their upcoming Annual </span>Golf Tournament because we had been
selected as the beneficiary of proceeds from their 2014 event. They asked that
someone from the Foundation attend the dinner and perhaps say a little
something on behalf of the foundation, when accepting the cheque. Sydney
assured me that I would just need to say a few words, written and provided to
me ahead of the event so I could prepare, thanking the donors and attendees,
while also giving them some information about TTP and the Foundation. Easy
Peasy! <o:p></o:p></i></span></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><i><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial;">This is a first for the <a href="https://www.answeringttp.org/" target="_blank">Answering TTP Foundation</a>, so of
course we were thrilled to hear that the Foundation was this year’s charity of
choice for the OIAA Golf Tournament; how could I turn down this opportunity! I
did however, have to consider a couple of things before accepting this
invitation: (1) It was going to take me two hours during Friday’s rush hour traffic
to reach the event and, (2) the event fell on the night before the Walk to
Answer TTP Together, the Foundation’s global fundraiser/awareness event for
which I am Chair. I could easily have passed on the invite, but felt very
strongly that it was important to everyone involved that a representative from
the Foundation be in attendance. So of course, I happily accepted.</span><span lang="EN-US"><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></i></span></div>
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<span lang="EN-US"><span style="font-family: Trebuchet MS, sans-serif;"><i>On September 19<sup>th</sup>, Taryn equipped me with a hard copy of my
“speech”, awareness materials to hand out, and with a smile, she wished me good
luck.</i></span></span></div>
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<span lang="EN-US"><span style="font-family: Trebuchet MS, sans-serif;"><i>I managed to recruit Janice, a fellow volunteer, to accompany me on this
road trip. We arrived at the Sparrow Lakes Golf Course in Welland at 6:00 p.m.,
and were welcomed with open arms by Katie, the President of the OIAA and her
team of organizers. Katie’s cheerful and friendly greeting put any lingering
apprehension and anxiety to rest right away. She escorted us to her table where
we met fellow organizers and enjoyed a delicious buffet dinner.<o:p></o:p></i></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6d9Pa7T858S5QHyXTnNmEqOtTnz1eVoU8HRq84bc0ih9vSjnhcTCc2pcnddtx5IKbFwAd_Q641g-QaHpScZPvHUVW2pjgA_wSBW371WVcfN9zSsEbLODnF7suAgeA0jZxEmuB4Cfxj-E/s1600/Wainfleet-20140919-00132.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><i><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6d9Pa7T858S5QHyXTnNmEqOtTnz1eVoU8HRq84bc0ih9vSjnhcTCc2pcnddtx5IKbFwAd_Q641g-QaHpScZPvHUVW2pjgA_wSBW371WVcfN9zSsEbLODnF7suAgeA0jZxEmuB4Cfxj-E/s1600/Wainfleet-20140919-00132.jpg" height="240" width="320" /></i></a></div>
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<span lang="EN-US"><span style="font-family: Trebuchet MS, sans-serif;"><i>Katie proceeded to make the announcement that Answering TTP Foundation
was the charity they had chosen as the beneficiary of their 2014 golf
tournament and how TTP had recently touched this business’s community, thus
making the cause near and dear to them. Katie’s boss was diagnosed with TTP in
2014, and as a result of blood clots floating in his brain he suffered a stroke.
<o:p></o:p></i></span></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWLS7QW1YHhAqh16CUFu6SNtuSF4luBh5nEKPhuPyFvFE6yws9oMxwak43leoU8qzQ2_sKeQ1pRRKzbA0Lqwh70NQWTM6SmVT_inS7Ia5z7DAPnv4RWljdt8Ug2WFp5QCFF7vgTb-2KlI/s1600/Charity.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWLS7QW1YHhAqh16CUFu6SNtuSF4luBh5nEKPhuPyFvFE6yws9oMxwak43leoU8qzQ2_sKeQ1pRRKzbA0Lqwh70NQWTM6SmVT_inS7Ia5z7DAPnv4RWljdt8Ug2WFp5QCFF7vgTb-2KlI/s1600/Charity.jpg" height="262" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Janice, Pino, Marie, Rita & Katie (from left) </td></tr>
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<i style="font-family: 'Trebuchet MS', sans-serif;">Katie presented me with the proceeds, over $2,000 that will go towards
the Foundation’s TTP education, support and research initiatives and then asked
me to say a few words. Throughout the evening there was a hum of chatter but
when I started speaking, you could hear a pin drop in that room. People were keenly
focused on learning about TTP and the Foundation.</i></div>
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<i style="font-family: 'Trebuchet MS', sans-serif;">I was fortunate enough to meet Katie’s boss that evening along with his
wife, the woman who has been his rock. I was happy to hear that the hospital where
he underwent his treatment provided him with education materials that were
obtained from the Foundation, and in particular, <a href="https://www.answeringttp.org/resource-links" target="_blank">the New Patient Brochure</a> (it’s
reassuring to know that the hard work involved in preparing and distributing
these education materials is paying off). We spent considerable time just
listening to their struggles, disappointments, uncertainties, achievements,
concerns, determination and most of all, their positive outlook. They are
already brainstorming ideas of how they can support “give back” by hosting a
fundraiser to raise more funds for education and research.</i><br />
<i style="font-family: 'Trebuchet MS', sans-serif;"><br /></i></div>
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<span lang="EN-US"><span style="font-family: Trebuchet MS, sans-serif;"><i>We could easily have spent hours talking that night, but as the next
event requiring my attention was only 12 hours away, it was time for us to hit
the road. As Janice and I chatted on our drive home that night, we were
inspired by the courage and strength TTP patients and their supporters exhibit.
<o:p></o:p></i></span></span></div>
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<span lang="EN-US"><span style="font-family: Trebuchet MS, sans-serif;"><i><br /></i></span></span></div>
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<span lang="EN-US"><span style="font-family: Trebuchet MS, sans-serif;"><i>One thing is for sure; I will be honored to represent the <a href="https://www.answeringttp.org/" target="_blank">Answering TTP Foundation</a> the next time that opportunity presents itself."</i><o:p></o:p></span></span></div>
</div>
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<br /></div>
<div class="MsoNormal" style="text-align: center;">
<span lang="EN-US"><span style="font-family: Trebuchet MS, sans-serif;"><b><a href="https://www.answeringttp.org/get-involved" target="_blank">Are you involved with the Answering TTP Foundation yet?</a></b><o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Trebuchet MS, sans-serif;"><b><br /></b></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK3s-6ibvqv7J2WbZmWmUeoed36B0YkLcs8VjJcBGvCp0gTlB9r_yLEY1j-coAi_p8evDUaBYKLYQyPi56Z9JXJzkDRBrGOM4b34iR7Ya9IejNsux_veGbFTdD6uFQ6pebbDpelS6AbOk/s1600/iStock_000013405743Small+Volunteer2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK3s-6ibvqv7J2WbZmWmUeoed36B0YkLcs8VjJcBGvCp0gTlB9r_yLEY1j-coAi_p8evDUaBYKLYQyPi56Z9JXJzkDRBrGOM4b34iR7Ya9IejNsux_veGbFTdD6uFQ6pebbDpelS6AbOk/s1600/iStock_000013405743Small+Volunteer2.jpg" height="186" width="320" /></a></div>
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<br /></div>
<div class="MsoNormal">
<span lang="EN-US"><span style="font-family: Trebuchet MS, sans-serif;">Why not look at running the Foundation’s next third-party fundraiser?
Check out the website <a href="https://www.answeringttp.org/get-involved/organize-fundraiser-0" target="_blank"><b>HERE</b></a> for lots of great ideas for events that you can
organize and run from the comfort of your local community! Third-party events
are vital to the Foundation’s growth, as they not only help to raise
life-saving TTP Awareness, but they also raise life-changing funds for TTP
support, education and research! No event is too small or too great!<o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Trebuchet MS, sans-serif;">We can’t wait to help you with your event! </span><span style="font-family: Arial;"><o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;">On July 22, 2014, Christine Carrion, a TTP survivor,
held her first blood drive in honor of TTP in West Haven, CT. Below, Christine
shares why she decided to get involved and hold a blood drive, as well as what
the blood drive meant to her:<o:p></o:p></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG_PFyX1XbkZDqfrxZCxBXIcqNqDzE8RfNuGYBnaEkeZ8H77tgfRrBgo58JmkT7hknt82l0GisJuds_QNIknXz5NkQFLCuPOZ0HiTRCUCBFf5A_H7V0S9EFZDET7lB3_0NyOrMDVkg21g/s1600/Christine+Blood+Drive.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG_PFyX1XbkZDqfrxZCxBXIcqNqDzE8RfNuGYBnaEkeZ8H77tgfRrBgo58JmkT7hknt82l0GisJuds_QNIknXz5NkQFLCuPOZ0HiTRCUCBFf5A_H7V0S9EFZDET7lB3_0NyOrMDVkg21g/s1600/Christine+Blood+Drive.jpg" height="320" width="247" /></a><span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;"><i>“To begin the process, I wrote to the Red Cross with my
interest of hosting a blood drive and attached my story – the story of how
blood donation has saved my life. While I waited to hear back from the Red
Cross, I also reached out to the Answering TTP Foundation and filled out their
Blood Drive Form, to let them know what I was looking to do and to see how they
could help me.<o:p></o:p></i></span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><i>From there, things kind of just took off. The Red
Cross worked with me to select a date, time and location for my drive and the
Answering TTP Foundation helped to create flyers and spread the word to their
community by posting my event on the front page of their website with a link to
the flyer. The Answering TTP Foundation also sent us ribbons and info cards
that we were able to hand out at the drive to help spread awareness for TTP.</i></span></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;"><i>We printed out lots of flyers that our family helped
us distribute before the event. We also spread the word on Facebook and though
local paper and radio. <o:p></o:p></i></span></span></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;"><i>The Red Cross had set up an electronic appointment
book for the day and this made it really easy for people to make appointments
so they knew when they needed to show up on the day of the drive. The week
before the drive, there were 21 appointments and more people promising to show
up on the day. The Red Cross estimated that 26 people would come out that day
to donate.<o:p></o:p></i></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcD02vooSjJoKxQxPs5U7Jgq3f-EPWl9uOzgfxSb69avnFrqdDzh9nVAXW6py8mZQHHcxz38-zQX4C-uGvuAA-mML0YNosJA1IAmZEMH5zfSprzkshnDKW6EXkVOCfToPoKoe5OYN5H9c/s1600/10614073_10152588090260801_1755764638_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcD02vooSjJoKxQxPs5U7Jgq3f-EPWl9uOzgfxSb69avnFrqdDzh9nVAXW6py8mZQHHcxz38-zQX4C-uGvuAA-mML0YNosJA1IAmZEMH5zfSprzkshnDKW6EXkVOCfToPoKoe5OYN5H9c/s1600/10614073_10152588090260801_1755764638_n.jpg" height="198" width="320" /></a></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;"><i>My TTP patient match, found through the Foundation’s
Patient Connect Program, even decided to make the trip with her family to take
part in the drive as well! It was emotional and heartwarming to meet her for
the first time in person. Our families grew close and now we all keep in
touch and are planning our next get together!<o:p></o:p></i></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhv0iNo6xwG8ESfuQzrulm-QwJWYrqbCg6TEd8XaTVd0OwIbTx1fDCIMXZYQP69F7D8PFFddZGQg-aUMzVtVCs2_zsOQis4adGUuyThWCAdHGxziz-qQr5i1XV544wsxUNt5WDE7Nlikjg/s1600/1081711_10152588094815801_1629378707_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhv0iNo6xwG8ESfuQzrulm-QwJWYrqbCg6TEd8XaTVd0OwIbTx1fDCIMXZYQP69F7D8PFFddZGQg-aUMzVtVCs2_zsOQis4adGUuyThWCAdHGxziz-qQr5i1XV544wsxUNt5WDE7Nlikjg/s1600/1081711_10152588094815801_1629378707_n.jpg" height="320" width="240" /></a></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;"><i>On the day of the blood drive, my family, friends and
the Red Cross set up for the drive. Family, friends, co-workers, teachers, and
strangers all came to donate. I think a lot people came out because it
was a drive that was dedicated to someone in their own town. They were able to
put a face to the importance of blood donation! At one point there was a two-hour
wait to donate!<o:p></o:p></i></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFWQe1WZE_nWbCNDwG8Y6xDFtswn9MGt7CQeDBm-iBBAHq72wt3SxWQYhyE2-mW6455bb0NEV4iFhpzBEoQTAhfKQ6aF8HWO69f52AVyP1pgyKIE4lL21bNXBgmGH-_0I9iI_xjJ6L3ao/s1600/10602630_10152588093955801_430170314_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFWQe1WZE_nWbCNDwG8Y6xDFtswn9MGt7CQeDBm-iBBAHq72wt3SxWQYhyE2-mW6455bb0NEV4iFhpzBEoQTAhfKQ6aF8HWO69f52AVyP1pgyKIE4lL21bNXBgmGH-_0I9iI_xjJ6L3ao/s1600/10602630_10152588093955801_430170314_n.jpg" height="320" width="240" /></a></div>
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<i style="font-family: Arial, Helvetica, sans-serif;">I was overwhelmed by all the help, love, and support I
received for this event. It meant so much to me to give back some of what
I have taken and to truly understand how people that donate selflessly can
help save another life. Everyone spoke of what patients with TTP go through,
some took the handouts I had on the table with juice and snacks. All
wished us luck and well wishes. </i></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;"><i><b>By the event’s end, we had not received 26 donors but
36! 41 people came out that day to donate and 36 were viable donors.</b><o:p></o:p></i></span></span></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;"><i>I was approached by the Red Cross staff and told I had
a very successful drive. I was also invited to make my drive an annual
event!<o:p></o:p></i></span></span></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span></span></div>
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<span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;"><i>I am glad to say that I now have something to look
forward to in July, which happens to be the month I was diagnosed!"</i><o:p></o:p></span></span></div>
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<b><span lang="EN-US"><span style="font-family: Arial, Helvetica, sans-serif;">To view all the pictures from Christine's Blood Drive <a href="https://www.answeringttp.org/albums/christines-west-haven-ct-blood-drive" target="_blank">Click Here</a> to view our </span></span><span style="font-family: Arial, Helvetica, sans-serif;">photo book. </span></b></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b>Interested in organizing your own Blood Drive? We can help! To get started visit our website <a href="https://www.answeringttp.org/get-involved/blood-donation" target="_blank">Here</a>!</b></span></div>
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Taryn Byrnehttp://www.blogger.com/profile/14989306224618379122noreply@blogger.com0tag:blogger.com,1999:blog-8522572082967821303.post-49316532490230474922014-09-15T13:48:00.001-04:002014-09-15T13:48:22.670-04:00What are you doing to prep for your 2014 Walk to Answer TTP Together?<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC-MS_euRKgo4t_NwDdygleeGrCGACn1iU3TtOIUsvVy4aL3jILht45JqEzNpglLAF0gAehrUCO6JJK5AJMFHwO4L5OXoSrBfNo4pfLHo5GeNRHTHaxHUmptxnvIAgnwRf-qXENWMLddQ/s1600/WalkPeopleWordsDate.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC-MS_euRKgo4t_NwDdygleeGrCGACn1iU3TtOIUsvVy4aL3jILht45JqEzNpglLAF0gAehrUCO6JJK5AJMFHwO4L5OXoSrBfNo4pfLHo5GeNRHTHaxHUmptxnvIAgnwRf-qXENWMLddQ/s1600/WalkPeopleWordsDate.png" height="320" width="320" /></a></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-CA">It’s hard to believe that our 4<sup>th</sup>
Annual Walk to Answer TTP Together is just around the corner. On September 20,
2014, registered team and individual participants from around the globe will be
lacing up their sneakers to Make Strides to Save Lives in the Walk to Answer
TTP Together, walking in their communities for 2 hours to raise awareness and
funds for TTP support, education and life-changing research!<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-CA">This year, we talked to team “Cindy Moes”
captain Melissa Angermeier about her participation in the 2014 Walk to Answer
TTP. We wanted to know why drove her to register and what she and her team of
walkers are doing to make this year’s Walk better than ever. Below is what she
told us in a phone conversation. <o:p></o:p></span></div>
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<br /></div>
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<span lang="EN-CA"><b><br /></b></span></div>
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<span lang="EN-CA"><b>Why are you
walking in the 2014 Walk to Answer TTP Together?</b><o:p></o:p></span></div>
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<br /></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj91_kOzuFH-JIeTr9KoFx77ecOiEDVJhU8aU5LeLCiZFT3r1WLluD8Qz9lfz_8nxt4z__pTjQdma8QNZSosE-44MW5EtPZo9tPffZJgZKt_5_VfkRUMSssJsyxxyrZizkgHf0fNgZSMB8/s1600/Cropped.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj91_kOzuFH-JIeTr9KoFx77ecOiEDVJhU8aU5LeLCiZFT3r1WLluD8Qz9lfz_8nxt4z__pTjQdma8QNZSosE-44MW5EtPZo9tPffZJgZKt_5_VfkRUMSssJsyxxyrZizkgHf0fNgZSMB8/s1600/Cropped.jpg" height="146" width="320" /></a><span lang="EN-CA">“In March of 2011, our mother passed due to
complications of TTP. We have registered to walk the last 2 years, this is our
3<sup>rd </sup>year, because we want to do anything and everything we can to
help support the TTP community. We know that had our mom been a survivor of TTP,
she would have jumped right in and got involved with what ever she could to
help the TTP community.”<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-CA"><b>What do you do
to make your Walk special?</b><o:p></o:p></span></div>
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<br /></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhz9_QD0wR3FKpY-UBoTE9Tjuyyh8J9gaiVLjlbyqRV4URXI3xxGdtZoSPDgBSddXLaA-oxP97sPkMu8aSvr1CJac077xw5TyTLZqneor_8qhFFKnxcpffQ9fdQ5cMGQtGYovXqwY8oZKI/s1600/IMG_1184+crop.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhz9_QD0wR3FKpY-UBoTE9Tjuyyh8J9gaiVLjlbyqRV4URXI3xxGdtZoSPDgBSddXLaA-oxP97sPkMu8aSvr1CJac077xw5TyTLZqneor_8qhFFKnxcpffQ9fdQ5cMGQtGYovXqwY8oZKI/s1600/IMG_1184+crop.jpeg" height="180" width="200" /></a><span lang="EN-CA">“We make our Walk fun and a family event!
Our mom was an exciting person, always positive, always upbeat, and very
energetic. So we make sure that our Walk captures her spirit by keeping it fun
and upbeat and all about the need to raise awareness and funds for TTP. We also
have a picnic after our Walk so that we can spend time together as a family,
and my sister and I give out little gifts of thanks to the other participants
for walking with us. One more way that we make our Walk special is by having a
balloon release at the end to commemorate the memory of our beloved mom!” </span><i style="mso-bidi-font-style: normal;"><span lang="EN-CA" style="font-size: 10.0pt;">(Note
from the Foundation: please make sure you check with your local bylaws before
planning a balloon release)<o:p></o:p></span></i></div>
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<i style="mso-bidi-font-style: normal;"><span lang="EN-CA" style="font-size: 10.0pt;"><br /></span></i></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
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<span lang="EN-CA"><b><span style="mso-spacerun: yes;"> </span>Is there anything you do before your Walk to
raise awareness?</b><o:p></o:p></span></div>
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<br /></div>
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<span lang="EN-CA">“We pin up flyers where ever we are able to
and my sister and I try to attract the attention of local media, newspapers, radio
stations, etc. This year my sister and I are going to be on a local radio
station to talk about our walk. Here in South Dakota, not a lot of people know
about TTP and we really do try to get the word out however we can. We even
tried to book the local Blood Mobile to incorporate a blood donation into our
Walk. Unfortunately it was already booked, so we know for next year to call
early!”<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-CA"><b>As a 3 year participant in the Walk to
Answer TTP Together, I am sure you know about our awards, are you aiming for one
of three awards this year? If so, what are you doing to try to win?</b><o:p></o:p></span></div>
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<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr0Ovew1ZRWe1j3YovduAbV6luT3igfOFPVNbLNHcRiejRjKLe3TAEIRa18ryI_CyGZsFehecOVFHtsp9VtOQP-FEsnmAebXMnHjZAel-kgunFFGWrez13h6cpIMoIAJR9KOhANWmFIKQ/s1600/All+3.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr0Ovew1ZRWe1j3YovduAbV6luT3igfOFPVNbLNHcRiejRjKLe3TAEIRa18ryI_CyGZsFehecOVFHtsp9VtOQP-FEsnmAebXMnHjZAel-kgunFFGWrez13h6cpIMoIAJR9KOhANWmFIKQ/s1600/All+3.png" height="189" width="320" /></a></div>
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<span lang="EN-CA">“We are absolutely going for an award, the
Spirit Award. As I mentioned earlier our Walk is about being positive and
having fun, one of the ways we are keeping things upbeat and fun is by
decorating our Walk route. We have cut out poster board into puzzle pieces to
line our Walk route with and they each have a word written on it like “Hope”,
“Emergency”, and the Foundation’s website to name a few. We found red and black
knee-highs this year so some of the women walking will be wearing those. The
boys walking get into the spirit too by spraying their hair red and white. We
have tie-dyed t-shirts and tutus for the kids to wear and add puzzle pieces to
their shirts as well. Finally and most importantly, we ALWAYS have pictures and
pins that we carry and wear in memory of our mother, the reason we were touched
by TTP.”<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-CA"><b>Do you have any advice for TTP community
members who might be interested in Walking but are unsure about participating?</b><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-CA">“Take a leap forward and just do it! We are
a small community and we need to band together! The TTP community has become my
family and helped me through the hard times I have faced since losing my mom.
Participating in this Walk makes me feel closer to the community. There is
nothing to lose by participating, only positive gain! By walking, you can help
to raise life-saving awareness and funds for TTP in your local community. Our
Walk is small but we are determined to spread awareness and be the voice for
our mother and other patients and families affected by TTP.”<o:p></o:p></span></div>
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<span lang="EN-CA"><br /></span></div>
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<span lang="EN-CA"><br /></span></div>
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<b>Didn't have a chance to register to participate in this year's Walk? You can still get involved and make a difference in the lives of those touched by TTP donating to a team or an individual who is participating! No amount it too small or too great! <a href="http://walktogether.dojiggy.com/ng/index.cfm/ab29ba/regPages/participantSearch/?p=b41ddbd" target="_blank">Click Here to make a difference today!</a></b></div>
Taryn Byrnehttp://www.blogger.com/profile/14989306224618379122noreply@blogger.com0tag:blogger.com,1999:blog-8522572082967821303.post-30884851238747481952014-08-27T07:39:00.000-04:002014-08-27T07:40:23.736-04:00Crafting to Raise Money for the Walk to Answer TTP Together<div class="MsoNormal">
<span lang="EN-CA">It's that time of year again, time to <a href="https://walktogether.dojiggy.com/registration2/?455721500D750B0D0D747209125037562F437902057A740400" target="_blank">register</a> yourself and/or your team to walk in the <a href="http://walktogether.dojiggy.com/ng/index.cfm/ab29ba/regPages/pages/?p=b727505" target="_blank">Walk to Answer TTP Together</a> on Saturday, September 20, 2014, helping to raise awareness and funds for TTP support education and life-changing research. </span></div>
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<span lang="EN-CA"><br /></span></div>
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This year marks the 4th Annual <a href="http://walktogether.dojiggy.com/ng/index.cfm/ab29ba/regPages/pages/?p=b727505" target="_blank">Walk to Answer TTP Together </a>and some individuals and teams are challenging themselves to do more and raise more for the <a href="https://www.answeringttp.org/" target="_blank">Answering TTP Foundation</a>! Below is an example of how one individual is doing more to raise more funds and awareness to meet her ultimate <a href="http://walktogether.dojiggy.com/ng/index.cfm/9530/regPages/pledge/torontowalkers" target="_blank">Walk goal</a>! </div>
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<span lang="EN-CA">"<i>A few times a year, I get together with
girlfriends to try a new craft or recipe. In the past we have made pasta,
stained glass, tried felting and crocheting. We call these weekend afternoons
full of laughter and yummy treats “Craftaculars”. <o:p></o:p></i></span></div>
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<span lang="EN-CA"><i><br /></i></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTTYxsPjjHREMmTmCdlAnDd15y6LIP-Q61n7sgE48xlKqurBdAeO54JvgubS7E-LX3i_Cyk1AVEFWMY-NXvHYHsJzpc76cnOYq9kRiIJ5D8vSQ_AawvMZqD2z8PMDuVwUk0HXGqa0kVEs/s1600/2014.08.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><i><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTTYxsPjjHREMmTmCdlAnDd15y6LIP-Q61n7sgE48xlKqurBdAeO54JvgubS7E-LX3i_Cyk1AVEFWMY-NXvHYHsJzpc76cnOYq9kRiIJ5D8vSQ_AawvMZqD2z8PMDuVwUk0HXGqa0kVEs/s1600/2014.08.jpg" height="213" width="320" /></i></a></div>
<i><br /></i>
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<span lang="EN-CA"><i>On July 5<sup>th</sup>, it was my turn to
host. As I am not the handiest crafter, I choose strawberry freezer jam as our
activity. <span style="mso-spacerun: yes;"> </span>The strawberries were plump
and sweet. It was as simple as washing and mashing the berries, adding sugar
and pectin, and filling the jars. The freezer jam was much simpler and cooler
than the regular jam we made in previous years. No need to cook the freezer jam
or can the filled jars in a massive pot of boiling water.<o:p></o:p></i></span></div>
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<span lang="EN-CA"><i><br /></i></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2ogQP0MpTC-jxCcf-ue9dfD6kmpP-IQq6frQ1SKATTi4gm3rh_lPaXxINRGEnBw73lfmUnnpU8UHWsopaGdTsWxH62CseR8ohOXODq7sOziGtN7-7nxiiRSgn1Jo_al8qJulZiGQ6a1k/s1600/Craftacular+Jam.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><i><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2ogQP0MpTC-jxCcf-ue9dfD6kmpP-IQq6frQ1SKATTi4gm3rh_lPaXxINRGEnBw73lfmUnnpU8UHWsopaGdTsWxH62CseR8ohOXODq7sOziGtN7-7nxiiRSgn1Jo_al8qJulZiGQ6a1k/s1600/Craftacular+Jam.jpg" height="200" width="320" /></i></a></div>
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<i><br /></i></div>
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<span lang="EN-CA"><i>Instead of being reimbursed for the cost of
the activity, which is our group’s usual practice, I donated the supplies and
asked the group to donate toward the efforts of my Walk to Answer TTP Together
team, the <a href="http://walktogether.dojiggy.com/ng/index.cfm/9530/regPages/pledge/torontowalkers" target="_blank">Toronto Walkers</a>.<span style="mso-spacerun: yes;"> </span>I was
thrilled that not only did the jam turn out, but a fun afternoon at home with
friends contributed over $200 toward <a href="https://www.answeringttp.org/ttp-overview" target="_blank">TTP</a>! <o:p></o:p></i></span></div>
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<i><br /></i></div>
<div class="MsoNormal">
<span lang="EN-CA"><i>I’ve learned that mini fundraisers to raise
money toward your walk effort, and are easier to organize and more fun than you
may think. They aren’t anything to stress over and make everyone feel good to
have fun for a good cause. <span style="mso-spacerun: yes;"> </span><o:p></o:p></i></span></div>
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<span lang="EN-CA"><span style="mso-spacerun: yes;"><i><br /></i></span></span></div>
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<span lang="EN-CA"><i>I challenge you to give <a href="https://www.answeringttp.org/get-involved/organize-fundraiser-0" target="_blank">mini-fundraising</a>
for your walk effort a try."</i><o:p></o:p></span></div>
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<span lang="EN-CA">For ideas for your mini-fundraiser check out the Foundation's Organize a Fundraiser page <a href="https://www.answeringttp.org/get-involved/organize-fundraiser-0" target="_blank">HERE</a>. You will find lots of great ideas for a mini-fundraiser!</span></div>
Taryn Byrnehttp://www.blogger.com/profile/14989306224618379122noreply@blogger.com0tag:blogger.com,1999:blog-8522572082967821303.post-76175008475019855692014-08-21T08:00:00.001-04:002014-08-21T08:00:57.598-04:002014 Volunteer Appreciation Dinner<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: Arial, Helvetica, sans-serif;">On Tuesday, August 19, 2014
<a href="https://www.answeringttp.org/our-role-impact/our-volunteers" target="_blank">volunteers</a>, both new and seasoned, and <a href="https://www.answeringttp.org/our-role-impact/our-directors" target="_blank">board members</a> gathered for <a href="https://www.answeringttp.org/" target="_blank">Answering TTP Foundation's</a> Annual Volunteer Appreciation Dinner and Awards. The evening was
filled with lots of celebration, food and laughs! A big thank you to our
hostess, <a href="https://www.answeringttp.org/our-role-impact/our-volunteers" target="_blank">Margie Castiglione</a>, a Foundation volunteer who has hosted the past two
Volunteer Appreciation Dinners.<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Sherri Sullivan, Vice Chair
of the <a href="https://www.answeringttp.org/our-role-impact/our-directors" target="_blank">Answering TTP Foundation Board</a>, addressed all volunteers and thanked
them for their hard work and dedication that has helped the Foundation continue
to grow and move towards its ultimate goal to find an answer for TTP.</span><span style="font-family: Times; font-size: 16pt;"><o:p></o:p></span></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<object class="BLOGGER-youtube-video" classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=6,0,40,0" data-thumbnail-src="https://i.ytimg.com/vi/BWZVNaq_508/0.jpg" height="266" width="320"><param name="movie" value="https://www.youtube.com/v/BWZVNaq_508?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata" /><param name="bgcolor" value="#FFFFFF" /><param name="allowFullScreen" value="true" /><embed width="320" height="266" src="https://www.youtube.com/v/BWZVNaq_508?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata" type="application/x-shockwave-flash" allowfullscreen="true"></embed></object></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The 2013-2014 recipient of
the Heather Leckie Bryant award, in memory of
her determination and immense contribution to the Foundation (</span><span style="font-family: Arial, Helvetica, sans-serif;">Volunteer of the Year award</span><span style="font-family: Arial, Helvetica, sans-serif;">) was Ian Wilson.
Ian is the Foundation's IT Manager and is the mastermind and creator behind the
Foundation's amazing new <a href="https://www.answeringttp.org/" target="_blank">website</a> that was launched last August. Ian continues
to be involved on the backend of the Foundation's IT and keeps the Foundation's
IT moving smoothly! Thank you Ian for your continued contributions to the
Foundation, I am not sure where we would be without you! </span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-Af9FrgZgb4Pn8tOgM22vS-e9tn5fc34a5lAEeYgRMtQyPEIkQCmEPpcMF2ItrgtbY0YtpGLlgNrKT04NQyNBl2oKDgm6ooLBV9WoDLEUWCl-sjTeI5B9mLG2xv6QqUbyruVyGmO1atE/s1600/photo+3-3.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-Af9FrgZgb4Pn8tOgM22vS-e9tn5fc34a5lAEeYgRMtQyPEIkQCmEPpcMF2ItrgtbY0YtpGLlgNrKT04NQyNBl2oKDgm6ooLBV9WoDLEUWCl-sjTeI5B9mLG2xv6QqUbyruVyGmO1atE/s1600/photo+3-3.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sydney, Sherri & Ian (from left)</td></tr>
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<a href="https://www.answeringttp.org/get-involved/fundraising-initiatives/chance-change-game-night" style="font-family: Arial, Helvetica, sans-serif;" target="_blank">Chance for Change</a><span style="font-family: Arial, Helvetica, sans-serif;"> chair and
board member, Tammy Robertson, also took a moment to thank the incredible
volunteers who helped to bring the 2014 Chance for Change Game Night,
benefitting the </span><a href="https://www.answeringttp.org/" style="font-family: Arial, Helvetica, sans-serif;" target="_blank">Answering TTP Foundation</a><span style="font-family: Arial, Helvetica, sans-serif;">, to life! </span></div>
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/-EQP1QflbWo?feature=player_embedded' frameborder='0'></iframe></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">A big thank you to all
Foundation volunteers near and far! <a href="https://www.answeringttp.org/our-role-impact/our-accomplishments" target="_blank">The Foundation's accomplishments</a> to date would
not be possible if not for your generosity and dedication. It is only by
working together that we will be able to find an answer for TTP!<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">To see more pictures from the event check out out photo book <a href="https://www.answeringttp.org/photobook" target="_blank">HERE</a>.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Are you interested in
getting involved with the Foundation? Check out our website <a href="https://www.answeringttp.org/get-involved" target="_blank">Here</a> and fill out
the <a href="https://www.answeringttp.org/get-involved/how-you-can-help/volunteer-information-form" target="_blank">Volunteer Information Form</a> to get started today! <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We look forward to having you on the team!</span><span lang="EN-CA"><o:p></o:p></span></div>
Taryn Byrnehttp://www.blogger.com/profile/14989306224618379122noreply@blogger.com0tag:blogger.com,1999:blog-8522572082967821303.post-43344597468327585922014-07-04T15:15:00.003-04:002014-07-04T15:15:21.896-04:00Charlottetown Blood Drive 2014<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ-cibA3UoZfgRkG-va7qFHA83rYArR5cOtu3ASHqUHEoMDPb6osR_YpAjqMtg_Ni0223i-cKblSGpBGeyQH2XiW1p0WqCsHzwyMH26iSd6ORusUykWA8QkgquMm4lfTlhMXt_KYNCl9w/s1600/Blood+Drive_PAM.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ-cibA3UoZfgRkG-va7qFHA83rYArR5cOtu3ASHqUHEoMDPb6osR_YpAjqMtg_Ni0223i-cKblSGpBGeyQH2XiW1p0WqCsHzwyMH26iSd6ORusUykWA8QkgquMm4lfTlhMXt_KYNCl9w/s1600/Blood+Drive_PAM.jpg" height="320" width="247" /></a><span style="font-family: Arial, Helvetica, sans-serif;">On Friday, June 13, 2014, <a href="https://www.answeringttp.org/patient-stories/pam-smith" target="_blank">Pam Smith</a>, a TTP survivor and active<a href="https://www.answeringttp.org/answering-ttp-community" target="_blank"> Answering TTP Foundation community </a>member, held a <a href="https://www.answeringttp.org/get-involved/blood-donation" target="_blank">blood drive</a> in her community! </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><a href="https://www.answeringttp.org/articles/2014/06/16/congratulations-pam-smith-successful-blood-drive" target="_blank">20 units of whole blood were collected and 6 more people joined Answering TTP Foundation's Partners For Life team!</a></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Below is a note from Pam about why she organized the blood drive and how easy it was! </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<i><span style="font-family: Arial, Helvetica, sans-serif;">"With the help of <a href="https://www.answeringttp.org/" target="_blank">Answering TTP Foundation's </a>team in Toronto, who created posters and helped to promote the blood drive on the Foundation's <a href="https://www.answeringttp.org/" target="_blank">Website</a> and <a href="https://www.facebook.com/AnsweringTTPFoundation?ref=hl&ref_type=bookmark" target="_blank">Facebook</a> group. Organizing a blood drive in my community was an easy way to get involved and give back to the community!</span></i><br />
<i><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></i>
<br />
<i><span style="font-family: Arial, Helvetica, sans-serif;">I sent out e-mail messages to all of my friends and asked them to forward my request on to all of their friends and family. I put up posters around the city where I live, plus in 5 other communities within 50 miles of my city. </span></i><i><span style="font-family: Arial, Helvetica, sans-serif;">I reached out to local
radio stations to have my blood drive announced on their community bulletin
boards and had a small article written up in a seniors magazine that comes out
in the local newspaper. I also advertised my blood drive on my Facebook
page. </span></i><br />
<br />
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<!--EndFragment--><i><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></i>
<i><span style="font-family: Arial, Helvetica, sans-serif;">On the day of the drive the mother, sister and niece of my TTP friend from the UK joined me at the blood donation clinic to hand out information cards and ribbons (that were supplied by the <a href="http://answeringttp.org/" target="_blank">Answering TTP Foundation</a>) to donors. </span></i><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijj42s4R7tsudZaJFYrwvgIH8T3HQiohz6k41o4vBdPn865FFxXmXbHQopihmyYSTBJ9sRLyDMVUy4IqOTm6yIW9MvBcTx2pb2rirjKSJchKhuzaqticJ80EJw3_J2t5ku3ElVM-ESfP4/s1600/Sharing_Cropped.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijj42s4R7tsudZaJFYrwvgIH8T3HQiohz6k41o4vBdPn865FFxXmXbHQopihmyYSTBJ9sRLyDMVUy4IqOTm6yIW9MvBcTx2pb2rirjKSJchKhuzaqticJ80EJw3_J2t5ku3ElVM-ESfP4/s1600/Sharing_Cropped.jpg" height="197" width="320" /></span></a></div>
<i><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></i>
<i><span style="font-family: Arial, Helvetica, sans-serif;">The staff at the donation clinic were awesome and even baked cookies to give to blood donors!</span></i><br />
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<i><span style="font-family: Arial, Helvetica, sans-serif;">We live in a small Province but with a little bit of effort to advertise the event, I was able to attract 20 donors to participate that day!</span></i><br />
<i><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></i>
<i><span style="font-family: Arial, Helvetica, sans-serif;">Please help raise awareness for TTP and the need for blood drives!"</span></i><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">- Pam Smith</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Thank you Pam for all of your hard work and dedication! </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqOy_GflPptpL5pLiE5horGK38BcVnZVEGbk5O0uK_O1RzBb1WdAPezCe1KEs1S9kTZOkhPag46kHM6CJq8XnK18ZKSenu7uxGDkWj4qV_C4Ody5qbwzyhUcizks15bbo-eC9X83co5Ho/s1600/Partners+for+Life+Logo+2014.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqOy_GflPptpL5pLiE5horGK38BcVnZVEGbk5O0uK_O1RzBb1WdAPezCe1KEs1S9kTZOkhPag46kHM6CJq8XnK18ZKSenu7uxGDkWj4qV_C4Ody5qbwzyhUcizks15bbo-eC9X83co5Ho/s1600/Partners+for+Life+Logo+2014.jpg" height="200" width="200" /></span></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Thinking about organizing a blood drive in your local community? It's easy and we are here to help! Visit our <a href="https://www.answeringttp.org/get-involved/blood-donation" target="_blank">Blood Donation Page HERE </a>to get started!</span><br />
<br />Taryn Byrnehttp://www.blogger.com/profile/14989306224618379122noreply@blogger.com0tag:blogger.com,1999:blog-8522572082967821303.post-15746257131039145492014-06-17T09:11:00.000-04:002014-06-17T09:11:07.025-04:00Attending the Ohio State University TTP/aHUS Research Program Support Group<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">At 5am on June 3, 2014 I, <a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney Kodatsky</a>, set off, on what Google Maps calculated to be a 7 hour road trip, with my 1-year-old daughter and cousin from Toronto, Ontario to Columbus, Ohio. Plenty of time to make it to the support group session at 5pm, or so we thought. Turns out that traveling with a baby takes substantially more time. I was remiss to factor in the numerous stops to eat, change diapers, and of course to play... Add more time for pounding rain, accidents, construction and a dead car battery. It was a small miracle that we made it with an hour to spare! </span><br />
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<tr><td class="tr-caption" style="text-align: center;">Google Maps Route - Toronto to Ohio</td></tr>
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<span style="font-family: Arial, Helvetica, sans-serif;">I was impressed to see about 40 people filling the classroom of Starling Loving Hall of Ohio State University. Patients and their families had traveled from as far away as New Mexico to attend. <span style="line-height: 115%;">As
a patient, I find that these support groups are an important component to
patient well-being. I have found that these sessions help connect TTP patients,
and their supporters, to others who truly have a mutual understanding of what
it is to live with, or with someone who has, TTP. </span></span><span style="font-family: inherit; line-height: 115%;"> </span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFqqWkD65o_BO_hRBQXu3_xTPwwCoRkfyHyCMUxpuqevpS29f3FUCWVKRz-fcSzPd-LRseBh2LQeV9blK7eGwHPXuSnzW-KXOih1do4Qu2y5_o1R7TEI61MD4ltWVZWYTdGvqfPs-bKcE/s1600/2014.06.03+OHIO+SUPPORT+GROUP.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFqqWkD65o_BO_hRBQXu3_xTPwwCoRkfyHyCMUxpuqevpS29f3FUCWVKRz-fcSzPd-LRseBh2LQeV9blK7eGwHPXuSnzW-KXOih1do4Qu2y5_o1R7TEI61MD4ltWVZWYTdGvqfPs-bKcE/s1600/2014.06.03+OHIO+SUPPORT+GROUP.jpg" height="218" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Group shot from support group.</td></tr>
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<span style="font-family: Arial, Helvetica, sans-serif;"><a href="http://internalmedicine.osu.edu/hematology/directory/faculty/catalandspero/cataland-cv/" target="_blank">Dr. Cataland </a>welcomed everyone to the meeting and discussed the similarities and differences between aHUS and TTP (<a href="https://www.answeringttp.org/understanding-ttp/ttp-vs-hus" target="_blank">click here to learn more</a>). A number of patients in attendance had been reclassified as having aHUS after an initial diagnosis of TTP. Dr. Cataland also shared that the results of a study comparing the use of Prednisone vs. Cyclosporine together with Plasmapheresis will be released shortly. As a patient, who dreads the side of effects of Prednisone, I hope that Cyclosprine will be proven a good substitute for Prednisone in the <a href="https://www.answeringttp.org/ttp-overview" target="_blank">treatment of TTP</a>.</span></div>
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<tr><td class="tr-caption" style="text-align: center;">TTP Awareness Hat!</td></tr>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;"></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">I was thrilled to share updates from the <a href="https://www.answeringttp.org/" target="_blank">Foundation</a> with the group about our support, education and research initiatives. People loved the new hats that we are giving to patients and supporters who officially share their stories with us (<a href="https://www.answeringttp.org/patient-stories" target="_blank">click here to learn more</a>). The attendees were excited to learn about participating in the 2014 Walk to Answer TTP Together on September 20, 2014 (<a href="http://walktogether.dojiggy.com/ng/index.cfm/ab29ba/regPages/pages/?p=86906" target="_blank">click here for more details</a>). </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">I also took the opportunity to emphasize the need for more TTP community members to actively get involved with the Foundation. We have grown and need more active support from the community. It is time! Whether you want to get involved with advocacy issues, have a bake-sale or gala, support others or lend your services in some other meaningful way (<a href="https://www.answeringttp.org/get-involved" target="_blank">click here to find your fit</a>).</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">It was a great trip and I hope to make it back in October for the more formal support group session that will be attended by a very special out-of-town TTP physician. Ensure you are registered for the Answering TTP Community (<a href="https://www.answeringttp.org/answering-ttp-community" target="_blank">click here</a>) so that we can send you the session information.</span></div>
Answering TTP Foundationhttp://www.blogger.com/profile/03914638934418249663noreply@blogger.com2tag:blogger.com,1999:blog-8522572082967821303.post-17700963919240097522014-06-02T10:38:00.000-04:002014-06-10T08:26:15.419-04:00Joanie Totes<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1a1a1a; font-family: Arial; font-size: 13.0pt; mso-ansi-language: EN-US;">Early in 2014, Staci Rutherford, the
daughter of a <a href="https://www.answeringttp.org/patient-stories/william-rutherford" target="_blank">TTP patient</a>, reached out the <a href="https://www.answeringttp.org/" target="_blank">Answering TTP Foundation</a> to share
<a href="https://www.answeringttp.org/patient-stories/william-rutherford" target="_blank">her mother’s story</a> of TTP and her idea of how she could make a difference in
the <a href="http://answeringttp.org/" target="_blank">TTP community</a> moving forward. <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4pjsTmIzsuSQ2jiiJS3vqDlzABUMGjY3bKCATtWko3d8ncB0eP0eQzSmYxFBNWbNsNl6x3ykdNybwiTv-A8trJy2hBZ6Mpcqw3TvW5FbiNID7uiFbDQfhiKV2iVSbN3dIlQY6C0sOaa4/s1600/IMG_0290.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4pjsTmIzsuSQ2jiiJS3vqDlzABUMGjY3bKCATtWko3d8ncB0eP0eQzSmYxFBNWbNsNl6x3ykdNybwiTv-A8trJy2hBZ6Mpcqw3TvW5FbiNID7uiFbDQfhiKV2iVSbN3dIlQY6C0sOaa4/s1600/IMG_0290.JPG" height="255" width="320" /></a></div>
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<span style="color: #1a1a1a; font-family: Arial; font-size: 13.0pt; mso-ansi-language: EN-US;">Below is Staci’s story of how and why
she has decided to get involved!<o:p></o:p></span></div>
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<span style="color: #1a1a1a; font-family: Arial; font-size: 13.0pt; mso-ansi-language: EN-US;">Joanie Totes: Raising TTP
Awareness…one bag at a time™<o:p></o:p></span></div>
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<span style="color: #1a1a1a; font-family: Arial; font-size: 13.0pt; mso-ansi-language: EN-US;">Last spring, almost a week after
Mother’s Day, my mother, who I affectionately called “Joanie”, was diagnosed
with a rare, life-threatening autoimmune blood disorder, <a href="https://www.answeringttp.org/ttp-overview" target="_blank">ThromboticThrombocytopenic Purpura (TTP)</a>. She spent the entire summer in the
hospital, undergoing treatment but, unfortunately, things took a turn for the
worse. <o:p></o:p></span></div>
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<!--EndFragment--><span style="color: #1a1a1a; font-family: Arial; font-size: 13pt;">The service we had
for <a href="https://www.answeringttp.org/patient-stories/william-rutherford" target="_blank">Joanie</a> was a joyous celebration of her life. Family and friends shared
stories of how "fancy and fabulous" <a href="https://www.answeringttp.org/patient-stories/william-rutherford" target="_blank">Joanie</a> was. She always had
extraordinary taste. Everyone laughed while quietly reminiscing on their own
memories of <a href="https://www.answeringttp.org/patient-stories/william-rutherford" target="_blank">Joanie</a>. <a href="https://www.answeringttp.org/patient-stories/william-rutherford" target="_blank">Joanie </a>traveled and shopped around the world, and made
friends everywhere she went. Her beautiful smile and spirit could light
up a room. </span><span style="color: #1a1a1a; font-family: Arial; font-size: 13.0pt; mso-ansi-language: EN-US;">I knew from the moment I was
introduced to the <a href="http://answeringttp.org/" target="_blank">Answering TTP Foundation</a> that I wanted get involved to help
<a href="https://www.answeringttp.org/get-involved" target="_blank">raise awareness</a>. While grieving the devastating, unexpected loss of my mother,
I began <a href="https://www.answeringttp.org/get-involved/organize-fundraiser-0" target="_blank">brainstorming</a> on what I could do to honor her.<o:p></o:p></span><span style="color: #1a1a1a; font-family: Arial; font-size: 13pt;">It had to be something that truly represented
<a href="https://www.answeringttp.org/patient-stories/william-rutherford" target="_blank">Joanie</a>.</span><br />
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<span style="color: #1a1a1a; font-family: Arial; font-size: 13.0pt; mso-ansi-language: EN-US;">Joanie and I both loved accessories,
specifically, statement jewelry, scarves, and handbags. I grew up shopping
in her closet, so naturally I had began my own collection of handbags and
accessories, which eventually turned into a business. With a modest
investment from Joanie, I started </span><span lang="EN-CA"><a href="http://handbagreport.com/"><span lang="EN-US" style="color: #103cc0; font-family: Arial; font-size: 13.0pt; mso-ansi-language: EN-US;">HandbagReport.com</span></a></span><span style="color: #1a1a1a; font-family: Arial; font-size: 13.0pt; mso-ansi-language: EN-US;">,
an online store, and later, added a blog to report handbag trends and
designers. Joanie was always my #1 supporter - we threw purse parties,
traveled to trade shows and picked our favorite bags each month from the latest
fashion magazines. <o:p></o:p></span></div>
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<span style="color: #1a1a1a; font-family: Arial; font-size: 13.0pt; mso-ansi-language: EN-US;">One day, I had an “a-ha moment” and
decided to create a line of handbags, Joanie Totes, in memory of Joanie, that
would also raise awareness about <a href="https://www.answeringttp.org/ttp-overview" target="_blank">TTP</a>. As my concept for Joanie Totes took
shape, I came across the work of an incredibly talented fashion illustrator,
Jennifer Lilya. When I discovered her client list included
Bloomingdale’s, Saks Fifth Avenue, Neiman Marcus, T.J. Maxx, Marshalls, and
Sephora, I felt an instant connection because those were Joanie’s favorite
stores. I knew she would be the perfect person to bring my vision for
Joanie Totes to life. Once Jennifer and I designed the first Joanie Tote,
it was manufactured in Los Angeles’ fashion district. <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbtOC4RIWpeB5Wbm75Zef4gWvkKUPYqLGfesCQZa352KqqBv2kGEDx_WtNCJp3-yBc-MwjSPPBWG8pafoXvHp6GB-We3J11IfmoXtAfpXsVnzu7Ccl77gv77qp_ZnSdgB-3Ik7iXNHYOc/s1600/IMG_0288.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbtOC4RIWpeB5Wbm75Zef4gWvkKUPYqLGfesCQZa352KqqBv2kGEDx_WtNCJp3-yBc-MwjSPPBWG8pafoXvHp6GB-We3J11IfmoXtAfpXsVnzu7Ccl77gv77qp_ZnSdgB-3Ik7iXNHYOc/s1600/IMG_0288.jpg" height="320" width="198" /></a><span style="color: #1a1a1a; font-family: Arial; font-size: 13.0pt; mso-ansi-language: EN-US;">The ‘Be Fancy & Fabulous’ Joanie
Tote was launched on March 25, 2014, six months after Joanie went to paradise. </span><span style="color: #1a1a1a; font-family: Arial; font-size: 17px;">The mission of Joanie Totes is to raise </span><a href="https://www.answeringttp.org/ttp-overview" style="font-family: Arial; font-size: 17px;" target="_blank">TTP</a><span style="color: #1a1a1a; font-family: Arial; font-size: 17px;"> awareness…one bag at a time. On the 25th of every month, I honor Joanie and donate a portion of the sales to the Answering TTP Foundation to benefit patient support, education and research. I am dedicated to helping the </span><a href="https://www.answeringttp.org/answering-ttp-community" style="font-family: Arial; font-size: 17px;" target="_blank">TTP community</a><span style="color: #1a1a1a; font-family: Arial; font-size: 17px;">. I also hope to inspire others to get involved and make a difference. There is a huge sense of accomplishment in bringing my Joanie Totes idea to fruition. Not only has it been a form of therapy, it supports a cause that is extremely close to my heart. I am planning to design several new styles each season, with hopes of eventually expanding the line to other accessories.</span><span style="color: #1a1a1a; font-family: Arial; font-size: 13pt;"> </span></div>
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<span style="color: #1a1a1a; font-family: Arial; font-size: 13.0pt; mso-ansi-language: EN-US;"> <o:p></o:p></span></div>
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<span style="color: #1a1a1a; font-family: Arial; font-size: 13pt;">The ‘Be Fancy & Fabulous’ Joanie Tote is available
at </span><span lang="EN-CA"><span lang="EN-US" style="color: #103cc0; font-family: Arial; font-size: 13.0pt; mso-ansi-language: EN-US;"><a href="http://www.shop.handbagreport.com/">www.shop.handbagreport.com</a></span></span></div>
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<h3>
<span style="font-family: Arial, Helvetica, sans-serif;">Are you interested in getting involved and spreading awareness for TTP while also raising life-saving funds? Why not organize your own fundraiser. From Bake Sales, to Car Washes to Galas or Art Shows , every event makes a difference. Learn more at our website <a href="https://www.answeringttp.org/get-involved/organize-fundraiser-0">HERE</a>. </span></h3>
Taryn Byrnehttp://www.blogger.com/profile/14989306224618379122noreply@blogger.com0tag:blogger.com,1999:blog-8522572082967821303.post-77602015528238345282014-05-26T09:58:00.000-04:002014-05-26T09:58:53.050-04:00Answering TTP Foundation at the Emergency Medicine Update Conference<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3O9IEMVhsYtCvECCa7SBtE6Is_uB7QtOAhYCxokR1OMGCv1JobcVxaVQ78tKrdyQiO0rt9Ilgna6_MvL1RLJeY9SCDOeBEyrsSwTI7fGZZCMLsPkwy1zANKKJ3c31J1YXEVyFX3uQg3E/s1600/IMG_0602.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3O9IEMVhsYtCvECCa7SBtE6Is_uB7QtOAhYCxokR1OMGCv1JobcVxaVQ78tKrdyQiO0rt9Ilgna6_MvL1RLJeY9SCDOeBEyrsSwTI7fGZZCMLsPkwy1zANKKJ3c31J1YXEVyFX3uQg3E/s1600/IMG_0602.JPG" height="240" width="320" /></a><span lang="EN-CA"><span style="font-family: Arial, Helvetica, sans-serif;">On Thursday, May 8th and Friday, May 9th,
2014, our <a href="https://www.answeringttp.org/our-role-impact/our-operations-team" target="_blank">Charitable Programs Director</a>, Taryn, manned the first ever <a href="https://www.answeringttp.org/" target="_blank">AnsweringTTP Foundation</a> booth at the <a href="http://www.emupdate.ca/home" target="_blank">North York General Emergency Medicine UpdateConference</a>.<o:p></o:p></span></span></div>
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<span lang="EN-CA"><span style="font-family: Arial, Helvetica, sans-serif;">Why this conference? The <a href="http://answeringttp.org/" target="_blank">Answering TTPFoundation</a> was turned onto this conference as the “go to” conference for
Emergency Room doctors, nurses and personnel in the Canada and other parts of
the Globe. Since <a href="https://www.answeringttp.org/ttp-overview" target="_blank">Thrombotic Thrombocytopenic Purpura (TTP)</a> is considered a true medical emergency and many patients
of <a href="https://www.answeringttp.org/ttp-overview" target="_blank">TTP</a> end up in the emergency room during a <a href="https://www.answeringttp.org/ttp-overview" target="_blank">TTP </a>episode, we felt it was
important to raise awareness of <a href="https://www.answeringttp.org/ttp-overview" target="_blank">TTP </a>within this group. We also saw it as a
great opportunity to raise awareness and help promote the <a href="https://www.answeringttp.org/resource-links" target="_blank">NEW TTP Patient OrderSets</a>, which we have been piloting across Canada over the last year. <o:p></o:p></span></span></div>
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<span lang="EN-CA"><span style="font-family: Arial, Helvetica, sans-serif;">On both days, we had the chance to meet a
lot of Emergency Room doctors and nurses, most were from Canada but other came
from the US and as far away as Saudi Arabia. Each doctor, nurse or hospital
staff that came to our booth was given a copy of the <a href="https://www.answeringttp.org/resource-links" target="_blank">TTP patient order set #1</a>
and a TTP info card.<o:p></o:p></span></span></div>
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<span lang="EN-CA"><span style="font-family: Arial, Helvetica, sans-serif;">Are you interested in getting involved with
Advocacy within the <a href="http://answeringttp.org/" target="_blank">Answering TTP Foundation</a>, with the possibility of attending
these kinds of events? Visit our website to learn more about joining the
Foundation’s <a href="https://www.answeringttp.org/get-involved/how-you-can-help/volunteer-opportunities" target="_blank">Patient Advisory Board</a>. </span><o:p></o:p></span></div>
Taryn Byrnehttp://www.blogger.com/profile/14989306224618379122noreply@blogger.com0tag:blogger.com,1999:blog-8522572082967821303.post-79404087208480676602014-05-20T15:07:00.000-04:002014-05-20T15:07:23.599-04:00CORD Regional Workshop<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh05Lv-4-wv-cLzv0N_w7HErqv7iUR_UY9Cf5kngXWsLGaBql6mRwxUjHyahzCRQZGSfqyOLQ-TMz2S7-5epqspaIM8uHZdpCuqe7s6EA5nqB9Zv6NQ_3QPVVQHkj-XEs8qJvxqZZK0ZI/s1600/IMG_0576.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh05Lv-4-wv-cLzv0N_w7HErqv7iUR_UY9Cf5kngXWsLGaBql6mRwxUjHyahzCRQZGSfqyOLQ-TMz2S7-5epqspaIM8uHZdpCuqe7s6EA5nqB9Zv6NQ_3QPVVQHkj-XEs8qJvxqZZK0ZI/s1600/IMG_0576.jpg" height="320" width="240" /></a><br />
<span lang="EN-CA" style="font-family: Arial, Helvetica, sans-serif;">On Thursday, May 1<sup>st</sup> and Friday,
May 2<sup>nd</sup>, 2014, our <a href="https://www.answeringttp.org/our-role-impact/our-operations-team" target="_blank">Charitable Programs Director</a>, Taryn, attended the
<a href="http://www.raredisorders.ca/" target="_blank">Canadian Organization for Rare Disorders</a> (CORD) Regional Workshop in Toronto,
ON.<span style="mso-spacerun: yes;"> </span></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjD6f4k_CZWTWNQwtXkGomviU5geHw_tT70aQJaZCqTJStb8CLz3OLjilZ9qymZgM5NDF8OxRmiU6pcM_ChsZrl6G2t7-ufpHXxfDvVtorzCac0t42dFJ5aS3ZOUY22XkgoQBua3FHn9ik/s1600/IMG_0579.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjD6f4k_CZWTWNQwtXkGomviU5geHw_tT70aQJaZCqTJStb8CLz3OLjilZ9qymZgM5NDF8OxRmiU6pcM_ChsZrl6G2t7-ufpHXxfDvVtorzCac0t42dFJ5aS3ZOUY22XkgoQBua3FHn9ik/s1600/IMG_0579.jpg" height="320" width="240" /></span></a><span lang="EN-CA" style="font-family: Arial, Helvetica, sans-serif;">Beyond: Current and Evolving NEW Models for Access to Drugs and
included presentations on Lifecycle Approach to Drug Development and Access,
New Drugs: Orphan Drugs, Personalised Medicines and Biosimilars and Drug Review
Process and Drug Plans to name a few. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
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<span lang="EN-CA" style="font-family: Arial, Helvetica, sans-serif;">If you have been following along with the
<a href="http://answeringttp.blogspot.ca/" target="_blank">Foundation’s blog</a>, you might have seen that the Foundation is a member of <a href="http://www.raredisorders.ca/" target="_blank">CORD</a>,
which is the organization that is currently leading the charge in the creation,
development and implementation of <a href="http://www.raredisorders.ca/currentIssues.html" target="_blank">Canada’s Orphan Drug Regulatory Framework</a> (to
read more about the Foundation’s participation with <a href="http://www.raredisorders.ca/" target="_blank">CORD</a> check out the blog
posts <a href="http://answeringttp.blogspot.ca/2014/03/a-day-on-hill.html" target="_blank">A Day on the Hill </a>or <a href="http://answeringttp.blogspot.ca/2013/10/answering-ttp-foundation-attends-cord.html" target="_blank">Answering TTP Foundation Attends CORD FallConference</a>).</span><br />
<br /></div>
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<span lang="EN-CA" style="font-family: Arial, Helvetica, sans-serif;">This regional workshop was no different
then <a href="http://www.raredisorders.ca/index.html" target="_blank">CORD</a>’s usual larger scale conferences, in that both days were packed full
of interesting and invaluable information. <o:p></o:p></span></div>
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<span lang="EN-CA"><span style="font-family: Arial, Helvetica, sans-serif;">Day 1 was dedicated to Health Technology
Assessment and Beyond: Current and Evolving NEW Models for Access to Drugs and
included presentations on Lifecycle Approach to Drug Development and Access,
New Drugs: Orphan Drugs, Personalised Medicines and Biosimilars and Drug Review
Process and Drug Plans to name a few. </span><o:p></o:p></span></div>
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<a href="http://www.raredisorders.ca/newsEvents.html" target="_blank">HERE</a> at the <a href="http://www.raredisorders.ca/index.html" target="_blank">CORD</a> website. <o:p></o:p></span></div>
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<span lang="EN-CA"><span style="font-family: Arial, Helvetica, sans-serif;"><b>Are you interested in getting involved with
Advocacy within the <a href="https://www.answeringttp.org/" target="_blank">Answering TTP Foundation</a>, with the possibility of attending
these kinds of events? Visit our website to learn more about joining the
Foundation’s <a href="https://www.answeringttp.org/get-involved/how-you-can-help/volunteer-opportunities" target="_blank">Patient Advisory Board</a>. </b></span><o:p></o:p></span></div>
Taryn Byrnehttp://www.blogger.com/profile/14989306224618379122noreply@blogger.com0tag:blogger.com,1999:blog-8522572082967821303.post-28152087572357407052014-05-12T13:06:00.000-04:002014-05-13T10:03:48.731-04:00Trekking for TTP … A 3rd Party Event<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
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<span style="font-family: Trebuchet MS, sans-serif;"><span style="color: #1a1a1a;">On April
12, 2014, Nazgol Eskandari, the daughter of a <a href="https://www.answeringttp.org/ttp-overview" target="_blank">TTP</a> patient, embarked on a
journey to Mount Everest Base Camp to help raise lifesaving awareness and funds
for <a href="https://www.answeringttp.org/ttp-overview" target="_blank">TTP</a>, while also marking the 10</span><sup style="color: #1a1a1a;">th</sup><span style="color: #1a1a1a;"> anniversary of her mother’s
passing of <a href="https://www.answeringttp.org/ttp-overview" target="_blank">TTP</a>.</span></span></div>
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbJno9GJudyl8IhrNR-OIko6EaML9iJY6SbsXgek3SfMNzjhVxy8vBQmtiyBUsAxn7k1Qo9fpQm6PhOTqpxjSrOtie6tG4SyS6wHnrz-9HpkYtwlnhLRw5Ak9rVSuvQPyHesuSSDRd_Ms/s1600/10287051_10154066706095265_1164588978834983822_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbJno9GJudyl8IhrNR-OIko6EaML9iJY6SbsXgek3SfMNzjhVxy8vBQmtiyBUsAxn7k1Qo9fpQm6PhOTqpxjSrOtie6tG4SyS6wHnrz-9HpkYtwlnhLRw5Ak9rVSuvQPyHesuSSDRd_Ms/s1600/10287051_10154066706095265_1164588978834983822_o.jpg" height="300" width="400" /></span></a></div>
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<span style="color: #1a1a1a;"><span style="font-family: Trebuchet MS, sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1a1a1a;"><span style="font-family: Trebuchet MS, sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1a1a1a;"><span style="font-family: Trebuchet MS, sans-serif;">Below is her
story.<o:p></o:p></span></span></div>
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<span style="color: #1a1a1a;"><span style="font-family: Trebuchet MS, sans-serif;">"In 2013, as
I looked ahead to the ten year anniversary of my mother’s untimely death from
<a href="https://www.answeringttp.org/ttp-overview" target="_blank">TTP</a>, I decided I wanted to do something special to mark the anniversary and to
make a difference in the <a href="https://www.answeringttp.org/answering-ttp-community" target="_blank">TTP community</a>. Since my mother’s death, my sister and
I have been actively donating to various causes that were close to my mother’s
heart, in her honor, but this year I decided I wanted to do more, have more
impact and do something big. A friend of mine had previously told me a lot
about Mount Everest Base Camp and I thought that this would be the perfect
journey for me to embark on to commemorate the 10 year anniversary, while
helping to make a difference. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1a1a1a;"><span style="font-family: Trebuchet MS, sans-serif;">I called my
event <a href="https://www.facebook.com/trekkingforTTP" target="_blank">Trekking for TTP</a>, with my ultimate goal being to raise as much money as
possible. I set my goal at $5,000.<o:p></o:p></span></span></div>
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<br /></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEin5n_-i4hK-paUFbr1fcoZiAA7e0VdoLG1bE5pd5gZvBv087JxsVblVeuol8_rEFAzzt3yOfFRsT8lW37SHyEiBPbjjt-pXMbn_CU1omkMONjKhITN-0scZWhIg6My2oIuR73fiUf6KxY/s1600/1965598_10154066710925265_7292120413656703898_o.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEin5n_-i4hK-paUFbr1fcoZiAA7e0VdoLG1bE5pd5gZvBv087JxsVblVeuol8_rEFAzzt3yOfFRsT8lW37SHyEiBPbjjt-pXMbn_CU1omkMONjKhITN-0scZWhIg6My2oIuR73fiUf6KxY/s1600/1965598_10154066710925265_7292120413656703898_o.jpg" height="240" width="320" /></a><span style="color: #1a1a1a;"><span style="font-family: Trebuchet MS, sans-serif;">I wanted to
ensure that the money I raised was put towards helping the <a href="https://www.answeringttp.org/answering-ttp-community" target="_blank">TTP community</a>, as
<a href="https://www.answeringttp.org/ttp-overview" target="_blank">TTP</a> was the reason my mother is no longer with us.<span style="mso-spacerun: yes;"> </span>I choose two beneficiaries that I would
donate all my fundraising proceeds to - the <a href="https://www.answeringttp.org/" target="_blank">Answering TTP Foundation</a> and the
University College London.<span style="mso-spacerun: yes;"> </span></span></span></div>
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<span style="color: #1a1a1a;"><span style="font-family: Trebuchet MS, sans-serif;"><span style="mso-spacerun: yes;"><br /></span></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh74f6VPecC7io8M3SQtBJYLxlMXEp3By4M-UDIxZskpmpmhyYspBzl4Tu7uxU9N5aLmxTZ4pmW9xYjV9lXiS2bt9IwVygDw0AHsWrUf6IqwGUb3UjnO11KxMwNhLkRomyyj9lucWM20Oc/s1600/10155125_10154066727710265_2050075353284722698_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh74f6VPecC7io8M3SQtBJYLxlMXEp3By4M-UDIxZskpmpmhyYspBzl4Tu7uxU9N5aLmxTZ4pmW9xYjV9lXiS2bt9IwVygDw0AHsWrUf6IqwGUb3UjnO11KxMwNhLkRomyyj9lucWM20Oc/s1600/10155125_10154066727710265_2050075353284722698_n.jpg" height="240" width="320" /></a><span style="color: #1a1a1a; font-family: 'Trebuchet MS', sans-serif;">Since deciding to undertake this journey last year, I have organized two bake sales, a walkathon, a charity brunch and my friends and family took part in the </span><a href="http://thecolorrun.ae/" style="font-family: 'Trebuchet MS', sans-serif;" target="_blank">Dubai Colour Run</a><span style="color: #1a1a1a; font-family: 'Trebuchet MS', sans-serif;">, with all the proceeds going towards the grand total of my </span><a href="https://www.facebook.com/trekkingforTTP" style="font-family: 'Trebuchet MS', sans-serif;" target="_blank">Trekkingfor TTP</a><span style="color: #1a1a1a; font-family: 'Trebuchet MS', sans-serif;"> event.</span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1a1a1a; font-family: 'Trebuchet MS', sans-serif;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1a1a1a; font-family: 'Trebuchet MS', sans-serif;">To help achieve my $5,000 goal, I set up a </span><a href="https://www.facebook.com/trekkingforTTP" style="font-family: 'Trebuchet MS', sans-serif;" target="_blank">Facebook </a><span style="color: #1a1a1a; font-family: 'Trebuchet MS', sans-serif;">page detailing what I was about to do and why, a </span><a href="http://www.youcaring.com/other/trekking-for-ttp/115216" style="font-family: 'Trebuchet MS', sans-serif;" target="_blank">YouCaring page</a><span style="color: #1a1a1a; font-family: 'Trebuchet MS', sans-serif;"> and I sent a personalized email to all my family and friends </span><a href="https://www.answeringttp.org/ttp-overview" style="font-family: 'Trebuchet MS', sans-serif;" target="_blank">about TTP</a><span style="color: #1a1a1a; font-family: 'Trebuchet MS', sans-serif;">, and the </span><a href="https://www.facebook.com/trekkingforTTP" style="font-family: 'Trebuchet MS', sans-serif;" target="_blank">Trekking for TTP</a><span style="color: #1a1a1a; font-family: 'Trebuchet MS', sans-serif;"> event.</span><span style="color: #1a1a1a; font-family: 'Trebuchet MS', sans-serif;"> </span><span style="color: #1a1a1a; font-family: 'Trebuchet MS', sans-serif;">The donations came flooding in.</span></div>
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<span style="color: #1a1a1a; font-family: 'Trebuchet MS', sans-serif;"><br /></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEij6ZWqZqMOuRUSDTC6HBfuRHziEXsvuo7p7BsI5cVqumi77LvWMogL1UYhkHLSXeFrjGN4sEefvu9WHG_Ugfviy8i8zvClJTKA7-eKzTfjz8fJKj6-wTssAZvSAC-SwUv7Y3XFQJgtIV0/s1600/1523736_10154066698850265_2082660861573763008_o.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEij6ZWqZqMOuRUSDTC6HBfuRHziEXsvuo7p7BsI5cVqumi77LvWMogL1UYhkHLSXeFrjGN4sEefvu9WHG_Ugfviy8i8zvClJTKA7-eKzTfjz8fJKj6-wTssAZvSAC-SwUv7Y3XFQJgtIV0/s1600/1523736_10154066698850265_2082660861573763008_o.jpg" height="240" width="320" /></a><span style="color: #1a1a1a; font-family: 'Trebuchet MS', sans-serif;">To ensure that I could maximize my donation from my event to the two Foundations I had chosen, I relied heavily on friends, family and my own bank account to fund my journey. One of my friends kindly offered me most her trekking gear, as she had done the trek to the Mount Everest Base Camp. Any other gear I needed, I purchased myself. The tickets, tour and clothing were either donated to me or paid for by me.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQYTUhSTISts0TA7HREQE1J-vS8NpU0Gos4Eo2WBFM_PBB8WMrMXA_pqgCHSs6gynl3Pl2FP5YvfSA6Uh5f-ywLMzXB96drouiaVetTLdeC1CPdWtm0OU_GYGcO8JdRa421J5PRk8dOa0/s1600/10298403_10154066685685265_4211982789532956213_o.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQYTUhSTISts0TA7HREQE1J-vS8NpU0Gos4Eo2WBFM_PBB8WMrMXA_pqgCHSs6gynl3Pl2FP5YvfSA6Uh5f-ywLMzXB96drouiaVetTLdeC1CPdWtm0OU_GYGcO8JdRa421J5PRk8dOa0/s1600/10298403_10154066685685265_4211982789532956213_o.jpg" height="320" width="240" /></a><span style="color: #1a1a1a; font-family: 'Trebuchet MS', sans-serif;">Aside from organizing and executing smaller fundraising events, I continued to maintain a regular exercise regime, eating healthily and getting used to travelling long distances with a backpack. </span></div>
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<span style="color: #1a1a1a; font-family: 'Trebuchet MS', sans-serif;"><br /></span></div>
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<span style="color: #1a1a1a; font-family: 'Trebuchet MS', sans-serif;">On the 11th
of April, after much planning and much fundraising, I embarked on my journey.
The wonderful tour company I used very kindly organized for me to reach the Mount
Everest Base Camp on the day of my mother's anniversary - the 20th of April.</span></div>
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<br /></div>
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<span style="color: #1a1a1a;"><span style="font-family: Trebuchet MS, sans-serif;">The trek
was unlike anything I've ever done. It was truly a unique experience that was both
physically and mentally challenging. When I first began planning for this trip,
I was doing it all for my mother and for the <a href="https://www.answeringttp.org/answering-ttp-community" target="_blank">TTP Community</a>, it wasn’t until I
embarked on the trek that I realized that I was doing this for myself too. <o:p></o:p></span></span></div>
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<br /></div>
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<span style="color: #1a1a1a; font-family: 'Trebuchet MS', sans-serif;">I believe
my mother had a hand in guiding me on this trek to remind me that life is
beautiful and that despite her passing, there is still so much that I can
achieve. The trek taught me to be grateful and humble and to help others who
needed my help</span><span style="color: #262626; font-family: 'Trebuchet MS', sans-serif;">, both
within the <a href="https://www.answeringttp.org/answering-ttp-community" target="_blank">TTP community</a> and beyond.</span></div>
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<span style="color: #262626;"><span style="font-family: Trebuchet MS, sans-serif;"><br /></span></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><span style="color: #262626;">Unfortunately,
my mother’s experience with <a href="https://www.answeringttp.org/ttp-overview" target="_blank">TTP</a> did not have a happy ending. I still cannot
believe that ten years have passed since I lost my beautiful mother to this
rare disease. A disease that we had never heard of before and is still
relatively unknown. It has taken me a long time to come to terms with the
passing of my mother, but doing events such as my trek help me keep her memory
alive. Before organizing this event, I was not terribly active within the
<a href="https://www.answeringttp.org/answering-ttp-community" target="_blank">TTP community</a>, but I am happy now that I am. I like that I can share my
experience with people who know what it feels like to lose a loved one to <a href="https://www.answeringttp.org/ttp-overview" target="_blank">TTP</a> and
that I can help make a difference - no matter how small. I hope my story can
inspire others to do more for those affected by <a href="https://www.answeringttp.org/ttp-overview" target="_blank">TTP</a> and bring the community
together to share <i>their</i> stories."</span><span style="color: #1a1a1a;"><o:p></o:p></span></span></div>
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<span style="color: #262626;"><span style="font-family: Trebuchet MS, sans-serif;"><br /></span></span></div>
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<span style="color: #1a1a1a; font-family: 'Trebuchet MS', sans-serif;">- Nazgol Eskandari</span><br />
<span style="color: #1a1a1a; font-family: 'Trebuchet MS', sans-serif;"><br /></span>
<span style="font-family: 'Trebuchet MS', sans-serif;"><span style="color: #1a1a1a;">On behalf of the Foundation and the entire TTP community we would like to thank Nazgol for her dedication that helped to raise over </span><span style="color: #cc0000; font-size: large;">$2,500</span><span style="color: #1a1a1a;"> to benefit the Answering TTP Foundation. </span></span><br />
<span style="color: #1a1a1a; font-family: 'Trebuchet MS', sans-serif;"><br /></span>
<span style="color: #1a1a1a; font-family: 'Trebuchet MS', sans-serif;">To learn more about 3rd party events and how to organize your own check out our <a href="https://www.answeringttp.org/get-involved/organize-fundraiser-0" target="_blank">Organize a Fundraiser Page</a></span></div>
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<tr><td class="tr-caption" style="text-align: center;">aHUS patient (Michael) giving update speech</td></tr>
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<span lang="EN-CA">On Saturday, April 26<sup>th</sup>, 2014,
both myself (<a href="https://www.answeringttp.org/our-role-impact/our-operations-team" target="_blank">Taryn</a>, Charitable Programs Director) and <a href="https://www.answeringttp.org/patient-stories/gergana-sandeva" target="_blank">Gergana</a> (TTP Patient and
<a href="https://www.answeringttp.org/our-role-impact/our-directors" target="_blank">Answering TTP Foundation Board Member</a>), were invited to attend <a href="http://www.ahuscanada.org/" target="_blank">aHUS (atypical Hemplytic Uremic Syndrome) Canada’s</a> 2<sup>nd</sup> Annual Meeting.<span style="mso-spacerun: yes;"> </span>As you might not be aware,<a href="https://www.answeringttp.org/ttp-overview" target="_blank"> TTP</a> and <a href="https://www.answeringttp.org/understanding-ttp/ttp-vs-hus" target="_blank">aHUS </a>are
closely related blood disorders and are so similar in presentation that it can
make it difficult for doctors to differentiate between them. It is not uncommon
for patients to be diagnosed as having one disorder, only to be “re-classified”
or “re-diagnosed” at a later date.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span lang="EN-CA">Both disorders fall under the umbrella term
<a href="http://answeringttp.blogspot.ca/2013/12/tma-what-does-it-mean.html" target="_blank">Thrombotic Microangiopathy (TMA)</a>. Check out our previous blog “TMA – What Does
it Mean…” <a href="http://answeringttp.blogspot.ca/2013/12/tma-what-does-it-mean.html" target="_blank">HERE</a> for more explanation. <o:p></o:p></span></div>
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<span lang="EN-CA">The day started bright and early at 8 am with breakfast and introductions, and <a href="https://www.answeringttp.org/patient-stories/gergana-sandeva" target="_blank">Gergana</a> and I were able to meet and speak with some aHUS Canada board members as well as aHUS patients. It was amazing to hear how many members of this small patient group were first diagnosed as having TTP and then years later were re-classified as aHUS. I even had the chance to talk to one patient who was currently unsure of her diagnosis, as her medical professionals had yet to classify her.</span></div>
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<tr><td style="text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhblfV9czPix_NzX3Vo4ZGckZgn9EAq9S86ZIxNc1YExLv9eKw-gihRkRcjatxsMHJSvofF3cD0mHzinVXabAq-1WQjggAY8Hy2NbkEKN4ptnXmY3dsuSLuOM-dSfxmy1c_RJMPK-WemLo/s1600/Dr.+CP.JPG" height="320" style="margin-left: auto; margin-right: auto;" width="240" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dr. Christopher Patriqui</td></tr>
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<span lang="EN-CA"><o:p></o:p></span>Throughout the day, there were a lot of informative presentations on various topics ranging from access to <a href="http://www.soliris.net/ahus/HCP/Clinical_Development.html" target="_blank">Solaris</a>, a treatment used to treat aHUS patients to a clinical update presentation given by Dr. Christopher Patriquin, which was packed with information on both <a href="https://www.answeringttp.org/ttp-overview" target="_blank">TTP</a> and <a href="https://www.answeringttp.org/understanding-ttp/ttp-vs-hus" target="_blank">aHUS</a> and Compliment activation.</div>
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<span lang="EN-CA">Overall, it was a very informative day that helped both the <a href="https://www.answeringttp.org/" target="_blank">Answering TTP Foundation</a> and <a href="http://www.ahuscanada.org/" target="_blank">aHUS Canada</a> see where there may be overlapping goals.<o:p></o:p></span></div>
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<span lang="EN-CA">Thank you again for the invite, aHUS Canada!</span></div>
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Taryn Byrnehttp://www.blogger.com/profile/14989306224618379122noreply@blogger.com0tag:blogger.com,1999:blog-8522572082967821303.post-34491580419074426812014-04-11T12:13:00.001-04:002014-05-14T07:59:18.923-04:00Apheresis Treatment Experience - From a Supporters Perspective!<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">Not being a TTP patient myself, I am always looking for
opportunities to better learn and understand what TTP patients face on a day-to-day
basis after being diagnosed with this rare blood disorder. On Thursday, April 3<sup>rd</sup>,
2014, I had my first opportunity to experience a patient receiving Apheresis.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">A couple of weeks ago <a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney Kodatsky</a>, the <a href="http://www.answeringttp.org/" target="_blank">Answering TTP Foundation’s</a>
fearless founder and Executive Director, received the unfortunate news that she
was relapsing with TTP for the 6<sup>th</sup> time. Instead of completely
shutting off from the Foundation while she underwent treatment and recovery,
she invited me, the Foundation’s <a href="https://www.answeringttp.org/our-role-impact/our-operations-team" target="_blank">Charitable Programs Director</a>, to come spend
the morning with her at <a href="http://www.stmichaelshospital.com/" target="_blank">St. Michael’s Hospital</a> in Toronto, ON, while she
received a round of plasmapheresis, so that I could see and learn, in person,
what the treatment looked like for a patient and how the treatment worked.</span></div>
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<div class="MsoNormal">
<span lang="EN-CA" style="font-family: Arial, Helvetica, sans-serif;">I arrived at <a href="http://www.stmichaelshospital.com/" target="_blank">St. Michael’s Hospital</a> at 7:00
am; a little early for her 8:00am treatment, but I wanted to make sure I didn’t
miss a moment of the experience. I headed up to the 8<sup>th</sup> floor to the
Apheresis room and was able to watch the nurse set up the room and prepare the
apheresis machine for treatment. I waited quietly and nervously in the hall; I
can only imagine the anticipation of <a href="https://www.answeringttp.org/patient-stories" target="_blank">TTP patients</a> as they await their
treatments. To be honest, not being a <a href="https://www.answeringttp.org/patient-stories" target="_blank">TTP patient </a>myself I had no idea what to
expect <a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney</a> to look like as she arrived for treatment. Would she look ill and
drained from the relapse? Would she be in a wheelchair due to weakness? Would
she have someone walk her up to treatment, just to make sure she was okay
getting there? Nope - I could not have been more incorrect. Just before 8 am a
bright eyed, wide smiling <a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney</a> came bounding around the hallway corner with
her medical binder and water bottle in hand, ready for her life-saving
treatment. She looked like she had more energy than I did at 8:00am in the
morning (I think that may be a little bit of the mother in her coming out, so
used to being up early with her daughter).</span></div>
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<br /></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We said our hello’s and headed into the Apheresis room to
begin <a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney’s</a> treatment. The nurses set <a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney</a> up on the bed and set me up
with a seat right beside the machine so that I could watch the entire procedure
from preparation of her central lines (they had been inserted the week before
when she first started treatment) to the very last drop of donor plasma. Now, I
have watched lots of videos and seen lots of pictures of apheresis machines at
work, but nothing could prepare me for how different it was being there as this
machine worked its magic in real life. I don’t know any better way to explain
it then being there made it all more “real”. As soon as <a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney’s</a> lines were all
hooked up, the machine was started and I have to be honest - when they turned
it on it startled me a little bit. The entire room came to life, as the machine
was louder than I expected as it started the life-saving procedure of spinning
out <a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney’s</a> old plasma for the new donor plasma.</span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhs3RUzGf83BgrVYrLN_UrPfN8Lhz5D3iRPahFV8xqnuFUqc4tIPbT8Lmok3FNf5px2Ct3Pt9IzjdHxTgnN4zphg7M9XmOEZSuwtmu2WSwZssTyEM8IKEn8iJG3RZDaAz_OzJwI8y1yspw/s1600/Sydney.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhs3RUzGf83BgrVYrLN_UrPfN8Lhz5D3iRPahFV8xqnuFUqc4tIPbT8Lmok3FNf5px2Ct3Pt9IzjdHxTgnN4zphg7M9XmOEZSuwtmu2WSwZssTyEM8IKEn8iJG3RZDaAz_OzJwI8y1yspw/s1600/Sydney.png" /></span></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">As <a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney</a> lay in the bed receiving her treatment, her nurse
Patti walked me through the process so that I could have a better understanding
of what was taking place. So here is what I know now thanks to Patti.</span></div>
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<br /></div>
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<b><i>Please keep in mind that I am not a trained medical professional and that the Foundation does not provide medical advice. The below is an explanation of the apheresis process as it was explained to me. If you have questions about the process please check with your health care provider.</i></b></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">When it is deemed necessary for a patient like <a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney</a> to
receive apheresis or plasmapheresis, they are hooked up with a central line
typically in their neck, chest or groin area (even though it is referred to as
a central line, which might lead some to believe one singular line there are
actually 2 lines, to allow for exit of the blood and re-entry once it has gone
through the apheresis machine). The process of having a central line is not
typically a pleasant one, so these lines are left in for the duration of
treatment and taken out once it is believed a patient is stable without the
treatment and will no longer need it. The central line allows the apheresis
nurses a place to connect the machine to the patient. One line is hooked up as
the exit line, where blood exits the patient and goes into the apheresis
machine. The other line is hooked up so that once the patient’s blood has gone
through the apheresis machine, it can re-enter the patient’s body. </span></div>
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<br /></div>
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<b>So what are all the bags that hang above the machine for?</b></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwXoWNtqggl8bD4K8CoK4sxuctJBhKiQxUFq6ou9R-OUqO-ZP6eNccufb3gXCn1t5xRNj7FKWDLwfVBHNXPsFOwzovKkGvNMsx3iz5qegmolRhexpnHPtsmbDpDBH67ixCQKrhh-i-uhk/s1600/photo+2.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwXoWNtqggl8bD4K8CoK4sxuctJBhKiQxUFq6ou9R-OUqO-ZP6eNccufb3gXCn1t5xRNj7FKWDLwfVBHNXPsFOwzovKkGvNMsx3iz5qegmolRhexpnHPtsmbDpDBH67ixCQKrhh-i-uhk/s1600/photo+2.JPG" height="320" width="240" /></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Well, from the picture to the right you can see that there were
quite a few bags above <a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney’s</a> machine. On the far left, in the front, hangs
the anti-coagulant bag that ensures the blood being brought into the machine
does not coagulate and gum up the machine. Next bag over (the small bag) is
calcium to help reduce one of the side effects of apheresis treatment, which is
muscle cramps. The last two bags on the right in the front row are the donor
plasma that is being added to <a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney’s</a> blood. What is the big bag hanging in
the back? That is all of <a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney’s</a> old plasma that is being spun out of her
blood through the apheresis process.</span></div>
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<br /></div>
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<b>How does the process work?</b></div>
<div class="MsoNormal">
<br /></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">As I mentioned before, <a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney</a> had two lines hooked up to her
and the apheresis machine. Line 1 takes the blood out of <a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney</a> and sends it
into the machine where it is spun at a high volume to separate out her old
plasma and add in the donor plasma. The blood then travels back into <a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney</a>
through line 2. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">The whole process took roughly about 2 hours. Most of which
<a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney</a>, her nurses and I spent talking. The time flew by and before I knew it
the nurse was shutting down the machine and cleaning and bandaging <a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney’s</a>
central line. Luckily this was a very
“smooth “ treatment and <a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney</a> did not have any reactions to the plasma she was
given, as many patients including <a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney</a> during previous treatments, have
experienced allergic reactions to donor plasma.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">As <a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney</a> lay in the bed relaxing after her treatment, I
asked her the only burning question I could think of pretty much the entire
time she had been receiving treatment - What does it feel like? She said the
only way to really describe it, was that it felt like her body was humming.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">All in all I was very thankful that I was able to experience
this life-saving treatment in person, though unfortunately due to a TTP
relapse. But this experience really helped me to better understand what the
treatment is all about and gave me a better perspective of what patients go
through when receiving apheresis treatment. TTP patients are really some of the
strongest people in the world!</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">I would like to thank <a href="https://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney</a> for giving me the opportunity
to learn more about TTP and its treatment<a href="https://www.blogger.com/blogger.g?blogID=8522572082967821303" name="_GoBack"></a> while she
herself is facing a relapse.</span></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">Wishing all TTP patients High Platelets! </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">To learn more about how you can donate blood or platelets in honor of TTP or to organize your own blood drive visit the Foundation's <a href="https://www.answeringttp.org/get-involved/blood-donation" target="_blank">Blood Donation Page HERE.</a></span></div>
Taryn Byrnehttp://www.blogger.com/profile/14989306224618379122noreply@blogger.com0tag:blogger.com,1999:blog-8522572082967821303.post-59446421483592726722014-03-24T16:03:00.000-04:002014-03-24T16:03:05.389-04:00The Toy Factory Lofts Party to Support Chance for Change<h2>
<b>The Toy Factory Lofts Party to Support Chance for Change</b></h2>
<br />
Corks were popped, the cheese was cut, homemade desserts were laid out and the roulette wheel was enticingly displayed in the lobby of the Toy Factory Lofts on Thursday March 20th. Sydney, using Heather, her 9 month old daughter, as 'The Cutest Lure in The World', engaged residents as they came through the lobby. Kelly reeled them in with the opportunity to spin the roulette wheel to win Patron tequila, tickets to the event or donate $15-$100 towards the purchase of a hybrid bike for the silent auction. Our volunteers came together like a well-oiled machine and hosted a great Wine & Cheese party to inspire the residents of The Toy Factory Lofts to support our Chance for Change event. <br />
<br />
Big thank you's to all the volunteers for your efforts and congratulations of meeting our donation goal!<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8522572082967821303.post-41750532704706659622014-03-12T13:26:00.001-04:002014-03-12T15:21:54.185-04:00A Day on the Hill<span style="font-family: Times, Times New Roman, serif;">On Tuesday, March 4th, 2014 I (Taryn, the Charitable Programs Director) had the privilege of attending the <a href="http://www.raredisorders.ca/" target="_blank">Canadian Organization of Rare Disorders (CORD)</a> Action Day on Parliament Hill in Ottawa, ON.</span><br />
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As someone who has never been on "The Hill" before, it was a really exciting and eye opening day. I was asked a few weeks ago, as a participant of <a href="http://www.answeringttp.org/get-involved/how-you-can-help/volunteer-opportunities" target="_blank">Answering TTP Foundation's Patient Advisory Board (PAB)</a> to attend the conference and Action day.When I first learned that I would be given the opportunity to attend Action Day I was a little nervous and intimidated as I have never been to <a href="http://www.parl.gc.ca/Visitors/index-e.asp" target="_blank">Parliament Hill </a>before let alone to meet and speak with politicians in their offices. Luckily, <a href="http://www.raredisorders.ca/" target="_blank">CORD</a> partnered me up with a team of individuals who were experienced in these kinds of meetings, consisting of a patient living with a rare disorder, the parent of a patient with a rare disorder and another rare disorder organization staffer, all of whom were willing to take me under their wings and show me the ropes!</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6bAk4vChNP6bf9pyXAUslg2BU_yyXhInON1S_f6BOoZ_ftnnFZpEGNUQYLNA_ZQi5zscmDT_LvN7A3blN4TWB2ppYxtFNC4bDzXeuyoeuXSHPYGKhCLTtJgIwztTRl3gBpVsA-cu24dg/s1600/Dr.+Bennett+1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: Times, Times New Roman, serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6bAk4vChNP6bf9pyXAUslg2BU_yyXhInON1S_f6BOoZ_ftnnFZpEGNUQYLNA_ZQi5zscmDT_LvN7A3blN4TWB2ppYxtFNC4bDzXeuyoeuXSHPYGKhCLTtJgIwztTRl3gBpVsA-cu24dg/s1600/Dr.+Bennett+1.JPG" height="210" width="320" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Times, Times New Roman, serif;">Taryn, Ken Chan, Carolyn Bennet, Jacqui Bowick-Sandor <br />& Kirsten Harkins (From left to right)</span></td></tr>
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<span style="font-family: Times, Times New Roman, serif;">Our first meeting was bright and early at 9 am, with Dr. Carolyn Bennett, the MP of St. Paul's, ON. Walking into her office I was a little nervous, but also very in awe of where I was. We were greeted by Dr. Bennett's staff and two students who were shadowing the MP for the day, all of them were extremely welcoming and that put my nerves at ease. Our meeting went great! It really felt like less of a meeting then a casual conversation about rare disorders and the need for awareness and regulation in Canada. </span><br />
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We had about half an hour between the end of our first and the beginning of our second meeting, giving us just enough time to get to the next building and through security with a few quick photos on The Hill in between.</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Times, Times New Roman, serif;">Jacqui, Kirsten, Taryn, Andrew Saxton, & Ken</span></td></tr>
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<span style="font-family: Times, Times New Roman, serif;">Our second meeting was with Andrew Saxton, the MP of North Vancouver, BC. He and his staff were very welcoming and we had a great conversation with him as well! Just before the meeting ended the bells of Parliament began to ring summoning all MP's to the house for a vote, which was a really neat experience. I swear the building came alive when this happened and you could feel a growth in energy</span><span style="font-family: Times, 'Times New Roman', serif;">! Thankfully we had just enough time to finish up our chat with Mr. Saxton before he was off to the house and we were off to our third meeting.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjD8FuyLA2K7_qIYNnKBbMbc_JAbpAjnweOIY4CsWedyicnbG_a4oy4SSCPoqNsvZUtpOPPARbYY3h_lMlGjScM1o-mpbcZQpb-B8o3NWacJOchSfztPCk54b3ygvNA5xlP8vyUvHDN93A/s1600/Tyrone+Benskin.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: Times, Times New Roman, serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjD8FuyLA2K7_qIYNnKBbMbc_JAbpAjnweOIY4CsWedyicnbG_a4oy4SSCPoqNsvZUtpOPPARbYY3h_lMlGjScM1o-mpbcZQpb-B8o3NWacJOchSfztPCk54b3ygvNA5xlP8vyUvHDN93A/s1600/Tyrone+Benskin.jpg" height="240" width="320" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Times, Times New Roman, serif;">Kirsten, Ken, Tyrone Benskin, Taryn & Jacqui</span></td></tr>
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<span style="font-family: Times, 'Times New Roman', serif;">Our third meeting was with Tyrone Benskin, the MP of Jeanne-Le Ber, Qc. We arrived at his office just as he was getting back from the house and he and his staff too were very welcoming. By this meeting I was feeling confident, energized and empowered. My team even encouraged me to take the reins and lead the meeting! The meeting went great and I felt even more energized walking out of the meeting then I had going in ... if that is possible.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCuGKdwaa7Amw0NYKrvIfoiR8cyO1ZDSH8I16Smh4CpXa2r_pJRcufjYt74Lv-n0e6EkMJ7q1Imu3aH-YiZrVYjK00N_j3Rl_bSYm4CyiQ-j2EObjdDycNss3MqIiVDqvz1IB89x5xT-A/s1600/Lois+Brown+1.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="font-family: Times, Times New Roman, serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCuGKdwaa7Amw0NYKrvIfoiR8cyO1ZDSH8I16Smh4CpXa2r_pJRcufjYt74Lv-n0e6EkMJ7q1Imu3aH-YiZrVYjK00N_j3Rl_bSYm4CyiQ-j2EObjdDycNss3MqIiVDqvz1IB89x5xT-A/s1600/Lois+Brown+1.JPG" height="240" width="320" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Times, Times New Roman, serif;">Kirsten, Jacqui, Lois Brown & Taryn</span></td></tr>
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<span style="font-family: Times, Times New Roman, serif;">After a break for some lunch and a presentation we were off to our fourth and final meeting of the day with Lois Brown, the MP of Newmarket and Aurora. Mrs. Brown also happens to be my MP and we quickly realized that we had a lot in common, including being graduates of the same High School, go figure! Like all the meetings before our fourth meeting went amazing!</span><br />
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<span style="font-family: Times, 'Times New Roman', serif;">All in all I think the day on The Hill was a success! I got to see Parliament inside and out (ps. the buildings are stunning!), I got to meeting with some friendly politicians, but most of all I was able to generate awareness of </span><a href="http://www.answeringttp.org/ttp-overview" style="font-family: Times, 'Times New Roman', serif;" target="_blank">TTP</a><span style="font-family: Times, 'Times New Roman', serif;"> and the need for support in gazetting the</span><a href="http://www.raredisorders.ca/currentIssues.html" style="font-family: Times, 'Times New Roman', serif;" target="_blank"> Canadian Orphan Drug Regulatory Framework.</a><br />
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<span style="font-family: Times, Times New Roman, serif;">To learn more about the Canadian Orphan Drug Regulatory Framework and/or to sign the petition, <a href="http://www.raredisorders.ca/currentIssues.html" target="_blank">Click Here</a>.</span><br />
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<span style="font-family: Times, Times New Roman, serif;">Next year we hope more of the Foundation's active volunteers can attend. To find out more about joining the Foundation's Patient Advisory Board visit our website <a href="http://www.answeringttp.org/get-involved/how-you-can-help/volunteer-opportunities" target="_blank">HERE</a>.</span>Taryn Byrnehttp://www.blogger.com/profile/14989306224618379122noreply@blogger.com0tag:blogger.com,1999:blog-8522572082967821303.post-89072601969744852322014-03-11T14:35:00.000-04:002014-03-11T14:40:34.159-04:00Delta Kappa Epsilon Fraternity's 2014 Blood Drive <div class="MsoNormal">
<span lang="EN-CA">On February 27<sup>th</sup>, 2014, the Delta Kappa Epsilon Fraternity (DKE) from the University of Toronto hosted a blood drive at the <a href="http://www.blood.ca/" target="_blank">Canadian Blood Services </a>clinic on College St. in
Toronto, ON. The blood drive helped to raise awareness of <a href="http://www.answeringttp.org/ttp-overview" target="_blank">Thrombotic Thrombocytopenic Purpura (TTP)</a> and the <a href="http://www.answeringttp.org/" target="_blank">Answering TTP Foundation. </a></span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Times, Times New Roman, serif; font-size: x-small;"><span style="background-color: white; color: #222222; text-align: start;">Mike Illiev, Jordan Sisco, Dan Gendelman, Jack Irish, </span><span style="background-color: white; color: #222222; text-align: left; white-space: nowrap;">Jordan Kamenetsky,</span><span style="background-color: white; color: #222222; text-align: start;"><br />Kai Zhang, Khash Razavi & Oleg Oshchepkov (from left to right)</span></span></td></tr>
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<span lang="EN-CA">Though we had quite a few first time donors from the Fraternity, this was not the first <a href="http://www.answeringttp.org/get-involved/blood-donation" target="_blank">blood drive</a> held on behalf of the Foundation by the Delta Kappa Epsilon Fraternity. The Fraternity has been
a dedicated supporter of the Foundation’s <a href="http://www.answeringttp.org/get-involved/blood-donation" target="_blank">Partners for Life blood donation team</a>
since 2012, hosting at least one blood drive a year.<span style="mso-spacerun: yes;"> </span>These efforts help ensure ensuring
that there is more blood available to all those in need. <o:p></o:p></span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhl9IYC_0OfVRSuDEb6OAQUIDAe3X4T8vlhGI9LrsZLABjS31rhvCdnysKvqDbChwJk81em2T04SFeGNVjjPbTnITKJOy1-6MyHyI05v7lFBBWioynbQRf-c01q0Wn-sXnYRAuHN2YnA5I/s1600/Group4.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhl9IYC_0OfVRSuDEb6OAQUIDAe3X4T8vlhGI9LrsZLABjS31rhvCdnysKvqDbChwJk81em2T04SFeGNVjjPbTnITKJOy1-6MyHyI05v7lFBBWioynbQRf-c01q0Wn-sXnYRAuHN2YnA5I/s1600/Group4.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Times, Times New Roman, serif; font-size: x-small;"><span style="background-color: white; color: #222222; text-align: start;">Dan Gendelman, Ryan Manraj, Jack Irish, </span><span style="background-color: white; color: #222222; text-align: left; white-space: nowrap;">Jordan Kamenetsky<br />&</span><span style="background-color: white; color: #222222; text-align: start;"> Khash Razavi (from left to right)</span></span></td></tr>
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The blood drive ran from 12pm - 4pm, giving the Fraternity members the opportunity to stop in to the clinic between before or after classes. We were also lucky enough to have two volunteer TTP patients (<a href="http://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney</a> and <a href="http://www.answeringttp.org/patient-stories/chantel-chaisson" target="_blank">Chantel</a>) come out to welcome the donors and share their stories of TTP and the need for blood donation.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKtsqOHHej_UA4ZzogZuNuqwmp_GkyTdwRLCFTMhnPb5jFm9YfTHsszMIfDYOsPFATOQDa4MP75ewOj4ph8jlyhK70LS8y2Eth-fwwz1FAQrnvQGuJ0_WvGY8Rd5vV1e2ANJXmNP3voYk/s1600/Sydney_Chantal2_Crop.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKtsqOHHej_UA4ZzogZuNuqwmp_GkyTdwRLCFTMhnPb5jFm9YfTHsszMIfDYOsPFATOQDa4MP75ewOj4ph8jlyhK70LS8y2Eth-fwwz1FAQrnvQGuJ0_WvGY8Rd5vV1e2ANJXmNP3voYk/s1600/Sydney_Chantal2_Crop.jpg" height="320" width="146" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sydney & Chantel</td></tr>
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A BIG thank you goes out to those who
donated at the blood drive, and also to those who may not have been able to
give blood themselves but still showed up to support the drive!<br />
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If you are interested in giving blood
and/or hosting a blood drive in your local community, check out our <a href="http://www.answeringttp.org/get-involved/blood-donation" target="_blank">Blood Donation Page</a> for more information. Organizing a blood drive in your community can help
to raise life-saving awareness for TTP and the need for blood donation!</div>
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<span lang="EN-CA"><br /></span>
<span lang="EN-CA">Check out photos from the event in <a href="http://www.answeringttp.org/albums/delta-kappa-epsilon-fraternitys-2014-blood-drive" target="_blank">Our Photobook HERE. </a></span></div>
Taryn Byrnehttp://www.blogger.com/profile/14989306224618379122noreply@blogger.com0tag:blogger.com,1999:blog-8522572082967821303.post-89652894162148773252014-02-22T08:33:00.003-05:002014-02-22T08:33:29.935-05:00We are the ones who can help...<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBampwwIRKm1qywj2O3y9nt0B-OI1VPWhsf_kQhSQTwNXUFcHbYJ1z_qvhAp-hxhyphenhyphen028E-b1W3W_7KfhhaGOwPNgGeSrEtNeBSbfd4f945o-L1OwIWitqzG7dJ0lx2ZN4zrkZAwraLwT8/s1600/Pam+on+Red+Point+Beach.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBampwwIRKm1qywj2O3y9nt0B-OI1VPWhsf_kQhSQTwNXUFcHbYJ1z_qvhAp-hxhyphenhyphen028E-b1W3W_7KfhhaGOwPNgGeSrEtNeBSbfd4f945o-L1OwIWitqzG7dJ0lx2ZN4zrkZAwraLwT8/s1600/Pam+on+Red+Point+Beach.jpg" height="200" width="161" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pam Smith</td></tr>
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In 2006, <a href="http://www.answeringttp.org/patient-stories/pam-smith" target="_blank">Pam Smith</a> went to the hospital thinking she was having a stroke. Three days later, she was diagnosed with a rare disease that neither she, nor her family, had ever heard of called <a href="http://www.answeringttp.org/ttp-overview" target="_blank">Thrombotic Thrombocytopenic Purpura (TTP)</a>. Being that TTP is so rare, the treatment (Plasma Exchange) Pam required was (and still is) not available at every hospital. Pam had to be transferred to a hospital in a different province to receive treatment.<br /><br />Five years after her initial diagnosis, in 2011, Pam experienced her first and second TTP relapses within 4 months of each other. During one of her treatment sessions, a staff member at the hospital where she was being treated told her about a website for a Foundation that was dedicated to TTP patients and supporters, the <a href="http://www.answeringttp.org/" target="_blank">Answering TTP Foundation</a>.<br /><br />Since learning about the <a href="http://www.answeringttp.org/" target="_blank">Answering TTP Foundation</a>, Pam has been very involved with the Foundation where and when she is able to. Below is her story of <a href="http://www.answeringttp.org/get-involved" target="_blank">volunteerism</a> within the <a href="http://www.answeringttp.org/" target="_blank">Answering TTP Foundation</a>.<div>
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Why I started…</h3>
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As a survivor of TTP, I knew as soon as I learned of the <a href="http://www.answeringttp.org/" target="_blank">Answering TTP Foundation</a> that it was something I wanted to get involved with. I started off small by <a href="http://www.answeringttp.org/get-involved/how-you-can-help/story-submission" target="_blank">submitting my patient story</a> in the hopes that my story would help give TTP a face and promote TTP awareness. <br /><br />After sharing my story, I started to brainstorm ways that I could get more involved with the Foundation without giving up all my spare time and tiring my self out. That’s when I discovered the Foundation’s <a href="http://www.answeringttp.org/get-involved/fundraising-initiatives/walk-answer-ttp-together" target="_blank">Walk to Answer TTP Together</a>. This would be how I could get more involved to promote awareness of TTP, while also helping to raise funds for research, support and education. (For those of you who might be new to the blog or the Foundation, the <a href="http://www.answeringttp.org/get-involved/fundraising-initiatives/walk-answer-ttp-together" target="_blank">Walk to Answer TTP Together</a> takes place every September. Anyone, anywhere, at any stage of life, can participate in this walk, as there is no set distance to complete. People around the world can register to walk any distance on the same day for two hours, to help raise awareness and funds for TTP). This was a perfect way for me to start spreading awareness in my local community with the help of my family and friends. This has become an annual event that we continue to participate in.<br /><br />In addition to participating annually in the walk, I have also tried to generate TTP awareness in my community by: sharing information on bulletin boards at the hospital where I was diagnosed; soliciting attention from the local media, which has led to me being interviewed on both <a href="http://www.cbc.ca/islandmorning/episodes/2013/02/25/blood-drive---pam-smith/">TV</a> and Radio stations; and, helping with <a href="http://www.answeringttp.org/get-involved/blood-donation" target="_blank">local blood drives</a>. All of these opportunities have helped me to spread TTP awareness while also growing my personal network. In fact, through a blood drive I helped with, I was able to encourage a number of staff from the blood clinic join me in my 2013 Walk to Answer TTP Together.<div>
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Why I continue…</h3>
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During my <a href="http://www.answeringttp.org/albums/2013-walk-answer-ttp-together" target="_blank">2013 Walk to Answer TTP Together</a>, I was approached by an acquaintance who told me his sister-in-law was currently being treated for TTP. She had initially gone to the hospital where I was diagnosed, the same hospital I often hang posters and information at. Unfortunately, unlike me, she was misdiagnosed and overlooked until her kidneys began to shut down. Instead of letting this information discourage me, I have allowed it to empower me. I want others to be aware of this serious and potentially deadly disease. As a TTP survivor, I know it is up to our small TTP community to promote awareness to help ensure that diagnoses are made as quickly as possible so that patients can receive life-saving treatment. <div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgB-AMWYFy_bN4IitWXsML9Rnm6XwSWTrMt8qiZv9Lnd8KMGCQJgr-9leTivK53tuIxqpLLe4LqGq25hFdv5i81kTDmxr9su2m9zBTb5xb3Gkg3apEo0cKNGbgwtwAlZBq_Qk1ExcmZAEg/s1600/photo+4+copy+2.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgB-AMWYFy_bN4IitWXsML9Rnm6XwSWTrMt8qiZv9Lnd8KMGCQJgr-9leTivK53tuIxqpLLe4LqGq25hFdv5i81kTDmxr9su2m9zBTb5xb3Gkg3apEo0cKNGbgwtwAlZBq_Qk1ExcmZAEg/s1600/photo+4+copy+2.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">TTP patient order set package</td></tr>
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Upping my volunteer game…</h3>
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A few months ago, I read that the Foundation had completed the first ever <a href="http://www.answeringttp.org/files/documents/TTP%20-%20Patient%20Order%20Sets.pdf" target="_blank">TTP patient order sets</a> and was piloting the distribution of these order sets to Hospital Emergency Rooms across Canada. Wow, I thought, what a great way for me to get more <a href="http://www.answeringttp.org/resource-links" target="_blank">TTP information</a> out around my community and Province. I wrote to the Foundation explaining what I would like to do, and asked if I could distribute the packages in my Province in person. The Foundation was really excited about my offer, and sent the <a href="http://www.answeringttp.org/files/documents/TTP%20-%20Patient%20Order%20Sets.pdf" target="_blank">TTP order set</a> packages right out to me. I spent the following weeks making trips around the Province, visiting hospitals to share my story and dropping off the <a href="http://www.answeringttp.org/files/documents/TTP%20-%20Patient%20Order%20Sets.pdf" target="_blank">TTP order set </a>packages.<br /><br />Before setting out on my new volunteer mission, I was fully prepared that I would probably not be welcomed with open arms at each hospital I visited, but I was determined not to let that discourage me. It was, and still is, my hope that the next time someone arrives at any one of the hospitals I visited, presenting with <a href="http://www.answeringttp.org/ttp-overview">TTP symptoms</a>, that a doctor or nurse will remember having heard about TTP from me. <br /><br />I went to 5 hospitals to distribute the <a href="http://www.answeringttp.org/files/documents/TTP%20-%20Patient%20Order%20Sets.pdf" target="_blank">Patient Order Sets</a> and was met with mixed reactions. It was tough when I was not taken seriously, and felt that the package would never get past the gatekeeper to the doctors who will ultimately diagnose TTP. My two best experiences while handing out the packages took place at the Island EMS and Polyclinic.<br /><br />At Island EMS, I met with the General Manager who took the time to speak with me privately in his office. He was very interested in the package and hearing about my experience. He told me they would use the information in their training sessions.<br /><br />While at the Polyclinic (the Polyclinic is the largest, non-hospital, medical center in Charlottetown, PEI) I met with the main receptionist who agreed to distribute TTP information cards along with a photocopy of a short letter I wrote about TTP and the Foundation’s website to all the doctors.<br /><h3>
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Closing thoughts…</h3>
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I am excited and proud that my family and I have been able to distribute a lot of information around our small Province. I feel like I was stepping outside my “comfort zone”, especially with the TV and radio experiences, but I knew that something needed to be done. <br /><br />If you or a family member suffers from TTP, please do all you can to get the information out to your community. We are the ones who can help others get a quicker diagnosis before other complications occur.<br /><br />
- Pam Smith<br /><br />
To find out more about getting involved and to <a href="http://www.answeringttp.org/get-involved" target="_blank">get involved</a>, fill out our <a href="http://www.answeringttp.org/get-involved/how-you-can-help/volunteer-information-form" target="_blank">Volunteer Information Form</a> or email us at <a href="mailto:Contact@answeringttp.org">Contact@answeringttp.org</a>.</div>
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Taryn Byrnehttp://www.blogger.com/profile/14989306224618379122noreply@blogger.com0tag:blogger.com,1999:blog-8522572082967821303.post-46780062059114641722014-02-19T10:39:00.000-05:002014-02-24T14:04:16.116-05:005 Reasons Why I Decided to Volunteer and Why You Should Too<h3>
<span style="font-weight: normal;">by Sherry Garcia</span></h3>
I get it. You're busy. Very busy. Work, kids, spouse, gym, social life. Just making it through the day is a challenge. How do you fit in volunteering even it it's for a cause you think is worth your time? I put this question in the rhetorical category a long time ago and used my busy lifestyle as an excuse to keep it there. I am embarrassed to admit that this was my attitude for all of my adult life. This year I decided to challenge that attitude and volunteer for the first time. So why did I decide to pop my 'volunteer cherry'? I blame it all on my good friend Tammy.<br />
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I met Tammy 2 years ago in my neighbourhood dog park. We shared a common interest - we had both just become first-time dog mommies. It didn't take me long to realize that Tammy is a dynamo; she works crazy hours, she has a prolific social life and she works tirelessly for a charity called <a href="http://www.answeringttp.org/" target="_blank">Answering Thrombotic Thrombocytopenic Purpura (T.T.P.) Foundation</a> That's <b>what</b> she does but it's <b>how </b>she does it that makes it really hard for me to say no to her. She smiles. A lot. She's got this funny little laugh that you'll hear within 10 seconds of starting a conversation with her. No matter how busy she is she always has time for you. She is one of those people that you just can't wait to see again. She is also the kind of person who makes it hard to justify my anti-volunteering attitude. If she can fit it into her life how can I justify staying on the side-lines? The short answer is I can't. But I promised you 5 reasons to volunteer and, not to worry, I haven't gone off-topic. Tammy is a big part of reason # 1.<br />
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<ol>
<li><b>You will meet amazing people</b>. Tammy is just one of the dynamic people on the <a href="http://chanceforchange.dojiggy.com/ng/index.cfm/ad261f2/regPages/pages/?p=110451" target="_blank">Chance for Change</a> committee. Chance for Change is an annual gala event held to benefit Answering T.T.P. In the last two meetings I sat spell-bound as great idea after great idea was put forward. Everyone had something to contribute, no matter their background, experience or even their age (we have two volunteers under 16). Which leads to # 2.</li>
<li><b>You will be able to contribute something special to the group</b>. This might be the fifth anniversary for <a href="http://chanceforchange.dojiggy.com/ng/index.cfm/ad261f2/regPages/pages/?p=110451" target="_blank">Chance for Change</a> but it is only the second year that it will be held at a public venue. There are new things to try and improvements to be made. And new ideas are warmly encouraged by Tammy (Chair) and Kelly (Vice Chair). At my first meeting I felt comfortable, though still a little nervous, contributing to the discussions.</li>
<li><b>You'll feel good knowing that you're making a big difference for people in your community</b>. Read <a href="http://www.answeringttp.org/patient-stories/sydney-kodatsky" target="_blank">Sydney's story</a> and be inspired. She's a brave, fearless person who is not accepting her fate but actively challenging her disease to try and stop her from accomplishing her dreams. Trudeau might have said "just watch me" first but Sydney embodies that attitude every day. Sydney is just one of the people in Canada dealing with <a href="http://www.answeringttp.org/ttp-overview" target="_blank">TTP</a>. All their stories are inspiring and, with so few resources available to them, your efforts have a direct impact on their lives. Literally. You can't get more IRL (in real life) than that.</li>
<li><b>You don't have to give up watching The Bachelor</b>. Honestly, you will still be able to watch your favourite TV shows because the time requirement is really not as bad as you think. These people are organized. While the process might not quite be a well-oiled machine it certainly doesn't squeak. Of course as we get closer to the event things will get busier but I'm looking forward to the laughs, friendships and memories that will happen along the way.</li>
<li><b>You will become one of the amazing people that I'll talk about next year</b>. It's a cheesy reason, I know, but it's true. Next year I guarantee you will be inspiring new volunteers.</li>
</ol>
So, what are you waiting for? I can't wait to introduce you to Tammy...and Sydney and Kelly and Jessica and Emily and Margie and, well, all the wonderful <a href="http://chanceforchange.dojiggy.com/ng/index.cfm/ad261f2/regPages/pages/?p=a718c192" target="_blank">people on the committee</a>. If you're still not sure but you want to learn more stay tuned for stories about the committee and the crazy things we're doing. I'll be giving you a volunteer's-eye view of the intricacies of successfully executing a gala charity event. Phew.<br />
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Talk to you soon,<br />
Sherry<br />
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