Toronto & Virtual Support Group & Info Session

Annual Toronto & Virtual Support Group & Info Session

On Wednesday, May 8, 2013 Answering TTP Foundation held its annual Toronto & Virtual Support Group & Info Session. It was the second time we integrated the virtual option to enable participants from around the globe to use their telephone and/or computer to actively participate and listen-in.  

 

Dr. Spero Cataland

Thank you to Dr. Cataland for his pre-recorded presentation regarding the Long-Term Outcomes After Successful Treatment of TTP. Dr. Cataland is from Ohio, United States where he is the Clinical Associate Professor of the Division of Hematology and Oncology at The Ohio State University College of Medicine and Public Health. His research interests include Thrombotic Thrombocytopenic Purpura (TTP) and atypical Haemolytic Uremic Syndrome, with an emphasis on novel therapeutic approaches to the treatment of both disorders and long-term complications of both disorders. He has authored over 40 publications throughout his career. Dr. Cataland also runs a TTP Support Group out of his facility, which aims to provide a forum for patients and their supporters to openly discuss issues related to their previous diagnosis and treatment for TTP.

TO WATCH CLICK HERE.

He discussed the patterns being recognized by TTP specialists in patients since diagnosis, and some analysis that has been performed on these patterns to date. Included were the results from a study investigating memory deficiencies in patients - a topic that comes up at every support group! If you were unable to attend or were in attendance but would like to watch the video again please click on the link to the left.

Sydney Kodatsky

To break the ice for small group discussions, and to help encourage more patients to share their stories officially with the Foundation to raise awareness for TTP, Sydney Kodatsky, Executive Director, shared her TTP story. Sydney has had a long 5-year battle with TTP thus far. She has faced TTP crisis 5 times thus far. She shared her appreciation for blood donors and the medical staff involved in her care. Despite her reoccurring battle, she is hopeful for the future. In October she started on Cyclosporine to keep her in remission. This treatment seems to be working for her!

The break-out groups offered all participants, both in person and on the phone, the unique opportunity to share their experiences with other TTP patients and supporters. We were also lucky to have 3 Apheresis nurses present to be a part of our discussions and Q&A.

Gergana Sandeva, Patient Advisory Board Ontario, presented an update from the Foundation, which included information on the various types of Patient Support & outreach the Answering T.T.P. community has to offer:

•  Blood Drives – if you are interested in organizing one or getting more information please email contact@answeringttp.org.

•   Roadshow - connects the TTP community to further common goals within Canada and internationally.

•  Patient Advisory Board (PAB) - has been established to provide further patient support, community information development and advocacy issues.

•   Patient Connect - has been launched. It is a program to match patients with similar experiences and/or more newly diagnosed with more seasoned patients.

She also encouraged all participants to get involved by:

•    Participating in the 2013 Walk to Answer TTP Together to raise awareness and funds for TTP. Register Here Now!

Thank you to all who participated!

Winnipeg Meet & Greet

Group Photo

On Sunday April 14, 2013 Answering TTP Foundation held its first support group session in Winnipeg, MB. It was a great success! We had 20 patients and supporters attend the event.

Thank you to Mina Rajan, Patient Advisory Board Alberta, who helped to break the ice by sharing her journey with TTP, which started over 15 years ago.

Break-Out Groups

The break-out groups offered all participants the opportunity to share their experiences. As a patient, it is comforting to discuss ongoing effects and anxieties with others that have experienced a TTP crisis. By sharing, patients can support each other and foster hope.

But patients aren't the only ones affected by a TTP diagnosis. A patient's support network is a critical ingredient to recovery. These special people, who hold our hands through this trauma, benefit from talking through their experiences too.

 Foundation Update by Gergana Sandeva

Gergana Sandeva, Patient Advisory Board Ontario, presented an update from the Foundation and encouraged all participants to get involved by:

• sharing their stories to help personalize the need for awareness for TTP.
• participating in the 2013 Walk to Answer TTP Together to raise awareness and funds for TTP.
• volunteering their time and skills to the Foundation to host the next support group session or to further Foundation goals of awareness, education, support and research.

Every person touched by TTP provides the community with further insight into this complex and rare disorder.  Thank you to all who participated!

Written by Sydney Kodatsky.

Room Setup

TTP Symposium in Winnipeg

Registration

On Sunday April 14, 2013 Answering TTP Foundation hosted its first TTP symposium. The event was held as part of the Canadian Apheresis Group's Annual Meeting, with the goal of sharing TTP research developments and fostering TTP research opportunities. 

The audience included close to 50 doctors and nurses from across Canada who treat TTP. Delegates from the Foundation included: Sherri Sullivan (Vice Chair Advocacy), Gergana Sandeva (Patient Advisory Board, Ontario), Mina Rajan (Patient Advisory Board, Alberta) and myself.

We were excited to have two internationally recognized doctors provide an overview of recent developments in TTP and engage the audience in a collaborative discussion.

Dr. Spero Cataland

Dr. Spero Cataland presented Long-term Patient Outcomes in TTP. He discussed the patterns being recognized by TTP specialists in patients since diagnosis, and some analysis that has been performed on these patterns to date. Included were the results from a study investigating memory deficiencies in patients - a topic that comes up at every support group!

Dr. Cataland is from Ohio, United States, where he is Clinical Associate Professor of the Division of Hematology and Oncology at The Ohio State University College of Medicine and Public Health.   Dr. Cataland's research interests include Thrombotic Thrombocytopenic Purpura (TTP) and atypical Haemolytic Uremic Syndrome, with an emphasis on novel therapeutic approaches to the treatment of both disorders and long-term complications of both disorders. He has authored over 40 publications throughout his career and has served as a reviewer for the journals Blood, American Journal of Hematology, Nature Clinical Practice Cardiovascular, and Journal of Thrombosis and Hemostasis. Dr. Cataland is also involved in the TTP Support Group, which aims to provide a forum for patients and their family and friends to openly discuss issues related to their previous diagnosis and treatment for TTP.

Dr. Han-Mou Tsai

Dr. Han-Mou Tsai presented ADAMTS13: How it impacts on the diagnosis and management of microangiopathic disorders. His presentation spurred much important discussion amongst the audience.

Dr. Tsai will be a distinguished Professor of Medicine and Deputy Chief Executive Officer at  I-Shou University College of Medicine and Medical Center, Taiwan, beginning May 2013.  He has been the Professor of Medicine and Pathology and M. Elaine Eyster Professor of Hematology at Penn State-Hershey Medical Center in Hershey, Pennsylvania from 2008 to 2012.  Dr. Tsai's research interests include Thrombotic Thrombocytopenic Purpura (TTP). His accomplishments include the discovery and cloning of ADAMTS13 and its role in the pathogenesis of TTP. His current work includes VWF homeostasis and pathogenesis of microangiopathic hemolysis. 

Foundation Information Table

Breakfast was hosted by the Foundation

Preparing for the Symposium

Written by Sydney Kodatsky.

NRBDO Alberta Education Day

On March the 9, 2013, the Network of Rare Blood Disorders Organizations (NRBDO) Alberta chapter hosted a successful conference!  The Education Day was packed with discussion regarding common rare blood disorder topics, and focused on comprehensive care. The topics were easy to understand for all the patients present at the conference.  

In the afternoon, each group separated to individual rooms for discussions. Dr Bruce Ritchie spoke on TTP.  He explained about the disease and informed us on what is being researched at present.   Out of 14 people present, 6 were patients.  We were lucky to also have an Apheresis nurse participate in our discussion. All participants had the opportunity to share their story and learn from each other.

Answering TTP Foundation is excited to collaborate with the rare disease community. 

If we join force, we shall be heard!

Written by Mina Rajan, Patient Advisory Board

Roadshow Montreal

 On Friday March 1, 2013 I met Caroline for the first time to "cold call" the Montreal area TTP treatment centres. We were able to meet with TTP medical staff at the Royal Victoria Hospital, Hopital Notre-Dame, Hopital Maisonneuve-Rosemont, and Jewish General Hospital.

Caroline and Sydney

Hospitals Visited

 

New Patient Brochure

We encouraged all those we met with to share our free-of-charge new patient brochure with their TTP patients. Not only does this brochure help patients and their families understand a TTP diagnosis, but it introduces them to the supportive and informative Answering TTP Community.

It was a great start to growing the Quebec Answering TTP Community to enable the Foundation to influence equal access to the most advanced TTP treatment options.

On Sunday March 3, 2013 we hosted the first Quebec Meet and Greet Foundation session. Gergana (Patient Advisory Board) and I met with local patients and supporters to share and provide peer support,  explain why the Foundation exists, and how they can get involved to help answer TTP.

We are thrilled to have interest from this group to edit our French language translations, become involved on the Patient Advisory Board, organize local patient support group and information sessions, and fundraise for research.

Together we are more than the sum of each part!

Written by Sydney Kodatsky.

Congratulations to the Answering TTP Partner’s for Life Team!

Stephanie, Western University Student.

Together our Partner’s for Life blood donation team contributed 90 blood donations in 2012! Congratulations to all team members and all those who have actively recruited family and supporters to the team.  

Ninety blood donations is a great start for this program. What is even more exciting is the number of first time donors that come out as part of the team and continue to become regular donors. Did you know that young donors who are successful in giving 3 times are very likely to become regular donors?  As the average age of blood donors increases, recruiting new young donors is becoming increasingly important.

Delta Kappa Epsilon, University of Toronto fraternity, is doing their best to give back and engage their young members to become regular blood donors. The fraternity is a reliable participating partner in every In Honour of TTP blood drive to date.  The Foundation extends our appreciation for their extraordinary dedication.

Delta Kappa Epsilon, University of Toronto fraternity, partners for TTP Blood Drives!

Ann gives proudly for her brother

We still have a lot of opportunity to grow the team’s contribution. Blood donations are an integral part of TTP treatment. The amount of donated blood required for each treatment for a TTP patient depends on the size of the patient and response rate to treatment. Personally, I have received about 10 blood donations per treatment. Since 2008, I have received almost 60 treatments which translates to donations from approximately 600 donors. I am only 1 TTP patient. There are about 150 cases of TTP diagnosed per year in Canada. 

The 90 donations we raised this year, is only about 80% of the blood required to treat 1 of my relapses; only 36% of the blood required to treat my initial TTP crisis; and only about 15% of the blood I’ve required for TTP treatment to date. 

Tammy, Stephanie and Jeanie enjoy the BEST cookies!

Let’s double the donations in 2013! Please help recruit more members to our team.  TTP patients are encouraged to recruit their family and friends. Existing team members are asked to consider bringing a friend or co-worker the next time they donate. 

Still not convinced? Giving blood is the best excuse to refuel with cookies!

Visit www.AnsweringTTP.org to join the Answering TTP Partner’s for Life Team!

Answering TTP is listed as a Partner for Life with CBS

Written by Sydney Kodatsky.

Newest Partners for Life Team Member Gives Blood

First Time Blood Donation --- Sean K., Partners for Life Team

I recently joined the Answering TTP Foundation's Partners for Life Team with Canadian Blood Services. This is a tale of my very first time donating blood. 

I must tell you that I am not a fan of needles, but my worries were put to rest as soon as I arrived at the donation site. The staff was most welcoming and upon learning I was a first-timer, the staff took extra care to make me feel as comfortable as possible. At the first of the four stations, a nurse took a small sample from my finger to test my iron levels, then it was onto station two. This is where I filled out a questionnaire, which took about two minutes.

Now it was onto the third station, the donation station. After putting the needle in my arm, it only took  about fifteen minutes to fill the bag up with my plasma. I was expecting to feel different somehow after giving my blood, but was pleasantly surprised to find that I felt absolutely normal.

Finally it was on to station four, my favorite as it turned out. This is where you get have delicious cookies and juice for a quick refuel before heading home.

I figure that it’s more than a fair trade for such a small amount of my time to make a big difference.

Sean K.