Tuesday, 14 May 2013

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.

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!

Wednesday, 1 May 2013

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:
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