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Support Group & Info Sessions
For updates, including PHOTOS, regarding recent support group sessions please see below.
Participants from around the globe virtually joined those
who attended face-to-face in Toronto.
Together the group watched a pre-recorded slide presentation by Dr. Spero Cataland entitled: Long-Term Outcomes After Successful Treatment of 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.
To jump start the group discussion portion of the night, were participants were broken off into groups to share stories and experiences of TTP, Sydney Kodatsky, Executive Director, shared her TTP story.
Thank you to local Answering TTP Foundation volunteer and Patient Advisory Board member Gergana Sandeva. She helped both organize the event, and she shared the update from the Foundation. She encouraged all those in attendance to get involved by volunteering with the Foundation. Click here to find out how you can get involved!
Special thanks to the three apheresis nurses who attended, and were able to offer support to patients!
For more details please read the event blog here.
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!
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!
The group enjoyed an informative two hour session with Dr. Zypchen who gave a presentation, took part in group discussion and answered general questions.
thanks to local Answering TTP Foundation volunteer Iveta Finnson, who
helped organize the event and attended to facilitate and share her
Close to 50 patients and supporters attended to share and support one another. Dr. Cataland discussed some of the similarities and difference between aHUS and TTP, and informed the group about an upcoming headache study in TTP patients. Exciting developments!
About 30 people attended the first Saint John TTP Support Group & Info Session. Dr. Comeau (Hematologist Saint John Regional Hospital) gave an overview on TTP and answered general questions for the group. The session was preceded by a Passion for Plasma blood drive to enable patients to show their appreciation to blood donors. The group has decided to organize a local Saint John walk on September 22, 2012 to enable TTP patients, supporters and medical staff to walk together as part of the Walk to Answer TTP Together. Participants are looking forward to another session in 1 year's time.
This was an informal support group session to meet patients in the local Halifax area as part of the Maritime Roadshow. Over nachos and salad we shared our TTP experiences and engaged local patients to start planning a formal session in the fall or April 2013. Both Teela and Mark have shared their stories to help raise awareness for TTP.
Syd, Teela and Mark
The meeting went really well. Participants shared stories and talked about experiences in the hospital. One participant described the experience - It felt good talking to one another, knowing that we each knew what it feels like to go through the trauma.
The group set a couple of goals.
One was to offer support to current patients in the hospital by visiting them. (Providing the patient and family wanted the support). The other goal was to meet this summer and plan to walk as a group on September 22, 2012 as participants in the Walk to Answer TTP Together.
The March 8, 2012 TTP Support Group and Information Session had 2 firsts!
For the first time we hosted an international doctor to present information about TTP. Dr. Scully, University College London Hospital, presented the similarities and differences between TTP treatment in Canada vs. the UK. Notably the use of solvent detergent plasma used for Plasmapheresis treatment. Participants were encouraged by the reduced risk of pathogen transmission and the reduction of allergic reactions experienced by patients treated with this new blood product that is scheduled to be available for a sub-group of Canadian TTP patients in April 2012.
Another first was the conference call-in line that enabled the geographically dispersed patient population to participate from across Canada. This new participation platform was very successful and will be continued.
Thank you to all those who participated. Thank you to Dr. Scully, Dr. Rock (Chair of the Canadian Apheresis Group) and Dr. Pavenski (Saint Michael's Hospital, Toronto) for their attendance and participation. A special thanks to Dr. Pavenski for participating in the always interesting and engaging Q&A period.
Planning Team with Dr. Scully and Dr. RockGergana, Dr. Scully (University College London Hospital), Dr. Rock (Chair, Canadian Apheresis Group) & Syd
The 3rd Toronto TTP Support Group and Information Session held on October 27, 2011 was a more intimate sized group. We had more engagement from attendees than ever before.
Special thanks to the courageous patients who shared their experiences with the group. As always, these patient stories were very well received and broke the ice for the small group discussions. The small group discussions went so well, they went overtime and were still hard to wrap up.
We were very lucky to have had Dr. Rock, Chair of the Canadian Apheresis Group, to present information about her work. The evolution and ongoing study of TTP in Canada was very interesting. There is so much research opportunity to improve the prognosis for all TTP patients.
Planning Team with Dr. RockDianna, Gergana, Syd & Dr. Rock (Chair, Canadian Apheresis Group)
The most recent support group & info session run by Dr. Cataland at the James Cancer Hospital was held on Tuesday April 26, 2011. Sydney Kodatsky, Executive Director of Answering TTP Foundation, was in attendance to share and learn from the group.
It was an exciting session discussing TTP, HUS and the potential predictive value of the ADAMTS13 enzyme for assessing risk of
relapse for some TTP patients.
There was much excitement about the Walk to Answer TTP Together organized by Answering TTP Foundation and willingness to take part.
Syd with the Support Group Organizers
Dr. Cataland (Ohio State University Research Program), Gary (Britt Balser Foundation), Syd (Answering TTP Foundation), Linda (Ohio State University TTP Research Program)
The 2nd Toronto TTP Support Group and Information Session held on April 20, 2011 was a great success! We filled the room, Rotman generously donated for the evening, with close to 40 guests including patients, supporters, nurses and doctors. Over 90% of guests who filled out the feedback survey hope to attend the next session within 6 months. Moreover, we expect growing attendance as we connect with more patients via doctor and nurse recommendations, flyers, website traffic, information brochures, PR with Canadian Blood Services and word of mouth.
“They didn’t have support groups like this when I was diagnosed” – survey response
Dr. Licht, of SickKids Hospital in Toronto, gave a presentation to the group regarding his research into a parallel disorder, HUS, and its similarities to TTP.
We are fortunate to have had two patients share their personal experiences with TTP. Their courage to share helped foster a safe atmosphere for small group break out session discussions that followed.
Moreover, both Dr. Licht and Dr. Dotten, of Saint Michael's Hospital in Toronto, participated in the informal break out sessions and formal Q&A period.
We would like to thank the patients who shared their stories, Dr. Licht, Dr. Dotten, and the TTP nurses in attendance. Their participation helped make this a valuable evening for all in attendance.
The 1st Vancouver TTP Support Group and Information Session held on March 5,
2011. We had 6 patients, 4 supporters and two doctors in attendance. Dr. Yenson gave an overview of TTP which set the stage for participants to asked questions furthering the knowledge of all in attendance.
Moreover since it was a relatively small sized group, we had the opportunity to to have everybody share their personal experiences with TTP. The similarities and differences amoungst the group were amazing.
For more information about this session please visit the Roadshow Blog.
Vancouver Support Group Participants
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