Answering TTP Foundation Attends CORD Fall Conference

On Sunday, September 29, 2013 and Monday, September 30, 2013 Taryn (Charitable Programs Director) and Gergana (Patient Advisory Board), attended the Canadian Organization for Rare Disorders (CORD) Fall Conference in Ottawa, Ontario.

Both days were packed with informational presentations made by industry members (Pharma Companies), patients with different rare disorders, medical professionals and patient organization professionals.

The first day was dedicated to developing organizational excellence, which split participants into working groups that were geared towards helping patient organizations like Answering TTP Foundation learn more about; advocacy, volunteerism, patient support programs and communications both online and interpersonal. Gergana and Taryn split into different workshops in the hopes that Answering TTP Foundation could retain a wide variety of information to help the Foundation continue to grow and move forward with our goals! Some of what Taryn and Gergana learned will be seen in updates to programs such as the volunteer program as early as next week, with the introduction of our new Volunteer Involvement Form, which is a way to expedite the volunteer application process, allowing volunteers to sign up online. This will also allow Answering TTP Foundation better match volunteers based on their skill set to our many volunteer opportunities!

Yann Le Cam of EURODIS

The second day was equally as interesting and informative to the Foundation and focused on the planning process for a Canadian plan for rare disorders. We heard from panels of patients, medical and research professionals as well as industry professionals on the importance of developing a plan for rare disorders in Canada. We also had the pleasure of hearing from Yann Le Cam (Keynote speaker of the CORD fall conference), who is the Chief Executive Officer for Rare Diseases Europe (EURODIS). He spoke about the European rare diseases plan, which could be used as a guideline for the Canadian plan. That afternoon the conference was again broken out into small groups to help zero in on what we, as patient organizations in Canada, can do to help prepare the Canadian plan for rare disorders. 

To learn more about how you can get involved check out our "Get Involved" page and choose a volunteer level based on your availability. 

An Answering TTP Foundation 1st

Taryn during her Walk to Answer TTP

We are excited to announce that we have added a new member to the team. Taryn Byrne is our Charitable Programs Director. She will execute education, awareness, and support initiatives. Her duties will also include coordination of our grant process. The addition of this first paid position demonstrates the Foundation’s dedication to sustainability.

Taryn is a skilled individual with a strong passion to support volunteers and further the goals of a deserving cause. Last year she developed and managed two fundraisers to help raise money for a single mother of 3 who was off work due to illness, and was not qualified for benefits or compensation during her time off. Both fundraisers were 100% volunteer and donation based. Taryn knows first-hand the blood, sweat and tears that are shed by volunteers to run a successful fundraiser. She will do her best to make the most of every hard earned dollar to further the Foundation’s mission.

Getting to know Taryn over the past few months, it is clear that she is eager to gain knowledge of TTP, and to learn how she can further the goals of the TTP Community. She is enthusiastic about her new role and excited to help make a difference.

On behalf of the Answering TTP community welcome Taryn!

Canadian Blood Services - Staff Service Awards Ceremony

Sydney Kodatsky speaking to CBS staff

On Tuesday, September 24, 2013, Answering TTP Foundation’s Founder and Executive Director, Sydney Kodatsky, was asked to be the guest blood recipient speaker at the Canadian Blood Services (CBS) staff services awards ceremony, at the new state-of-the-art blood service facility in Brampton, ON . She was asked to tell her story of how blood saved her life and why blood donation is so important.

Not only did her presentation thank all CBS staff in attendance for their dedication and determination daily to ensure that clean blood products are available for patients in Canada when needed,  but she was also able to share her experience with Thrombotic Thrombocytopenic Purpura (TTP).

Sydney’s presentation was well received by all in attendance and helped to shed light onto a rare and life-threatening blood disorder. Sydney’s story, like so many others who have battled TTP, demonstrates the importance of blood donation; she has required donations from over 600 donors since her 2008 diagnosis of TTP and subsequent relapses.

CBS Brampton, ON lab

Following Sydney’s address CBS staff members were recognized individually for their years (5, 10, 15, 20, 25 and 30) of service. It was a lovely ceremony that showcased the dedication of CBS and their staff members to providing patients with live-saving blood and blood products. Sydney and the Answering TTP Foundation staff (me) and volunteer (Marie, Chair Walk to Answer TTP Together) who attended were honoured to be a part of the celebration.

CBS Brampton, ON lab

After the ceremony we were given a tour of the brand new facilities, where 1,200 donations of blood from approximately 12 clinical and mobile sites come daily to be tested, separated into its various components and prepared for distribution to 120 regional hospitals. We were given the unique opportunity to see the lab and watch the many dedicated technicians working tirelessly to ensure that blood donations are made safe and available for patients.

If you would like to find out about how you can donate life-saving blood or become a member of the Answering TTP Foundation Partners For Life click here.

Show Us Your Spirit!

Note: This is not a cash prize. Money will be added to the individual or team's total fundraised amount to fund TTP education, support and research.

Toronto Walkers 2012
Imagine how balloons, face paint 
& red clothing would 
draw more attention.

In years past, registrants in the Walk to Answer TTP Together have showed their spirit by registering for the Walk. On walk day everyone would wear their unique T-shirts to raise life-saving awareness for TTP. This year we wanted to pump up the spirit a little more,  therefore we are offering a Spirit Award to the TEAM or INDIVIDUAL who shows the MOST spirit during their walk! the winning team or individual will win an additional donation of $350 that will be added to your final donation total (Award has no cash value). Also the team captain of the winning team or individual who wins the first ever Spirit Award will receive a unique item to commemorate your award and contribution to TTP awareness spirit!

Since the announcement of this new award during our September 5^th Kick-off-Call we have been inundated with individuals and teams asking us what they can do to show their spirit to win the award? This has prompted the Answering TTP Foundation to brainstorm a few ideas for you! 

Below is a list of some of the ideas we had. **Please note none of the below ideas are requirements of participating in the Walk to Answer TTP Together. They are meant to be suggestions to add some extra spirit to your walk if you would like to.

• Red Balloons, Steamers, Ribbons or Bristol board – These are great tools to draw attention to yourself or your team as you walk!
• Face Paint – Why not paint your face red or write TTP on your face with face paint? For those of you who are really artistic you can try drawing puzzle pieces on walkers cheeks.
• Red Clothing to Complement Your Event T-shirt – Look through your closet, maybe you have a great pair of red pants or shorts that you can wear, red socks or a red long-sleeve shirt you can wear under your Walk T-shirt if you live in a colder climate (remember to keep your walk T-shirt visible as your top layer of clothing, should you need to layer).

We hope that the list above will help to inspire the spirit in your walk. We can’t wait to see what bigger and better ideas you come up with! Remember to be eligible for the spirit award you must send us pictures and videos! We want to see your TTP life-saving awareness spirit, and how much fun you had during your walk!

** Please note if you would like to be considered for The Spirit Award pictures must be submitted to Events@answeringttp.org no later than Monday, September 30, 2013 **

Walk to Answer TTP Together - How one Team Prepares.

2012 Walk to Answer TTP Together - Walking for Trevor

Two years ago, on September 24, 2011, Kathy Downs lost her son Trevor to TTP. The day Trevor died was the same day that Answering TTP Foundation held its first annual Walk to Answer TTP Together. Kathy took this as a sign. Last year, Kathy, with the help of Trevor’s family, friends and co-workers, decided to register a team to participate in the Walk to Answer TTP Together. She thought it would be the perfect way to mark the first anniversary of his death, while also helping to spread life-saving awareness about this blood disorder that took her son much too soon.

Trevor

When Walk day arrived last year team “Walking for Trevor” had more then doubled their initial goal to raise $5,000 and had recruited just shy of 30 registered participants to walk with their team in Trevor’s honour.  

This year, Kathy says they have raised their donation goal to what they brought in last year ($13,000) in the hopes of surpassing that!

In an effort to promote teams walking in the 2013 Walk to Answer TTP Together, I talked to Kathy to find out how her team prepares for the walk and what they do to make the walk appeal to those in their community that didn’t know Trevor. Here’s what she had to say:

2012 Walk to Answer TTP Together - Walking for Trevor

How did you initially get people interested enough to register as a part of the Walking for Trevor team last year?

We knew we wanted to participate in the walk to mark Trevor’s passing. We also thought it would be a positive way to get through a difficult time with those who knew and loved Trevor. So we started asking everyone we knew - family, friends and coworkers. The response and compassion were overwhelming! We found that lots of people who knew Trevor immediately wanted to help. A lot of them felt they had a personal need to do something to commemorate him and this Walk was the perfect way to do that.

Has it been more difficult getting people interested in registering to walk with your team this year?

This year, a lot of the same people who came out last year want to help again. It has become something for them to participate in every year that will hopefully have a huge impact on TTP patients. Many of our participants have expressed that they like that they feel they’re helping people while spreading life-saving awareness, so much so that now they are spreading the word to their family, friends and coworkers. So hopefully our walk team will keep growing!

What do you do to ensure the success in the goals for your walk?

We try to generate as much awareness as we can about what we are walking for and why before the day of the walk. We use all our social media accounts to advertise about the walk and to ask people to register to join us or to donate.  We reach out to our network as well to see what kind of connections they have and if they are willing to help, we draw on that. This year a friend of ours who has media connections has offered to help get us some media coverage in an effort to generate even more awareness. We also email EVERYONE we know, including distant family members and coworkers. We make sure we include all the information we would want to know (i.e. where the money is going, why there is a need to participate, what TTP is, etc) before donating or registering to participate in an event like the Walk to Answer TTP Together. The more people understand the more people are willing to help!

2012 Walk to Answer TTP Together - Walking for Trevor

What does your team do to prepare for walk day?

We have a meeting! We all get together to discuss a game plan for walk day. We discuss who is going to do what and split up who is responsible for recruiting who, so there is no overlap in asking people to participate or donate.  

What makes your walk day stand out?

A big team in matching shirts walking together helps to garner a lot of attention! Also, I make lunch for all our participants! I think it is a little incentive for people and it is a way for me to say thank you for supporting our family and Trevor.

Do you have any advice for people who want to participate and start a team?

ASK! You’d be surprised to find out how many people want to help, especially if they know you have been directly or indirectly affected by TTP. Make sure you tell people how rare TTP is, and that every little bit of help they can offer can have a huge impact on bringing awareness to the cause. Draw on the resources you have! We know we are lucky to have such a broad family and friends network, but even we were surprised at how many people came out to support us through registering to walk and donating money. As I mentioned earlier, we always ensure that our communication to people about the Walk is detailed yet concise. When people have a better understanding of the need for awareness, what TTP is and how it affects people, they are more willing to help!

So there you have it Answering TTP Foundation community - putting a team together and registering to walk is not so daunting.  Register yourself or your team by September 1, 2013. On Saturday, September 21, 2013 help generate life-saving awareness for TTP in your community! The Walk to Answer TTP Together is a two-hour walk that takes place wherever you are. The Walk does not specify a distance, as we understand that some TTP patients can suffer long-term effects and we want to ensure that anyone can participate in this walk, whether you walk the entire two hours or need to stop for breaks. Register by September 1, 2013 to join us to raise awareness and funds for this medical emergency!

Volunteer Appreciation Dinner

On Wednesday July 3rd, 2013 volunteers and board members got together for an evening filled with food, laughs and awards; at Answering TTP Foundation's annual Volunteer Appreciation Dinner and Awards Evening. Thank you to our "hostess volunteer with the mostess" - Margie Castiglione,  for hosting such a wonderful event!

This year an exciting new tradition was started with the first presentation of the Heather Leckie Bryant  award. This award is dedicated to the Memory of Sydney Kodatsky’s (the founder of Answering TTP Foundation) mother for her determination and immense contribution to the Foundation. Every year this award will be given to volunteer who goes above and beyond the call of duty to further the goals of the Foundation. 

Tammy Robertson (left), Sydney and Heather Kodatsky (middle), Alexis Levine (right).

The 1st recipient of The Heather Leckie Bryant Award is Tammy Robertson. Tammy is passionate about the Answering TTP Foundation and has volunteered at many events. From fundraisers to blood drives to stuffing envelopes. No job is too big or too small.  For the past 2 years,  Tammy has chaired the Chance for Change event. With her leadership and determination, the event has more than doubled in attendance and raised $150 000 at the last event in February 2013. Congratulations Tammy and thank you too all of our wonderful volunteers, none of what we have accomplished so far would be possible with out any of you. 

Aside from the food, fun and awards Alexis Levine, Chair & Secretary of the Board of the Answering TTP Foundation, gave a thank you address on behalf of the Foundation. Click here to watch, if you were unable to attend in person or via call in. Tammy also gave us a sneak peak at what to expect for 2014’s Chance for Change event. 

If you are interested in volunteering with the Foundation, please check out our website HERE. We look forward to having you on the team. 

Thank you again to all of our volunteers and your generous contributions, we look forward to working with you all again. You are the life-blood of this Foundation!

Check out the thank you video filled with pictures from this past year’s events, information about what we have accomplished so far and a sneak peak at something new the Foundation is working on…

What does NRBDO stand for, and why is the Foundation a member?

March 3 NRBDO Meeting at Héma-Québec in Montreal

Network of
Rare
Blood 
Disorder
Organizations

"The NRBDO is a coalition of patient groups, formed to share the best practices in heath care delivery for people with rare blood disorders such as TTP. Members of the patients groups work, advocate and lobby together to reach common goals including: ensuring that finite health care dollars are spent rationally so as to promote the health of our citizens, reduce pain and suffering, and help people to live as nearly normal lives as possible and to raise the level of awareness and knowledge of the patient groups."

Source: http://nrbdo.ca/

Being a member of this organization enables Answering TTP Foundation to be part of a large informative blood recipient community with a strong voice for advocacy.

During regular face-to-face meetings and conference calls,  member organizations share information about current blood issues, and best practices to further common goals. Member groups also share issues and solutions to run our uniquely sized patient driven organizations.

If you are interested in learning more or getting involved with the NRBDO through Answering TTP Foundation please contact us at contact@answeringttp.org.