Our heartfelt condolences to the family of the late Max Marin who died 10 days after being diagnosed with TTP. Max lived in Calgary, Alberta. He was a 45-year-old father, husband and well-known MMA trainer. Reports indicate that the TTP diagnosis was missed by the health clinic he visited initially. Only when his health deteriorated, and his family took him to the main hospital, was he diagnosed with TTP.
A research team at McMaster University has partnered with the International Society on Thrombosis and Haemostatis (ISTH) to create a clinical practice guideline on the diagnosis and management of TTP. The goal is to bring together a panel of expert researchers, clinicians, and patients to develop a set of recommendations on how to diagnose and treat TTP. Ultimately, this guideline will contribute to high quality care for patients with TTP around the world.
A healthcare research continues to recruit patients who have been diagnosed with acquired thrombotic thrombocytopenic purpura (aTTP) and live in the Continental US. This research focuses on understanding your experience with aTTP as well as evaluating a questionnaire designed for use in patients with aTTP. This research may help improve how the patients’ experience is accounted for in clinical trials for new treatments.
The Foundation would like to congratulate Dr. Zheng for being recognized with the 2017 Research Innovation in Scientific Excellence (RISE) Award form the American Association of Blood Banks (AABB). More about the award here. Dr.
On October 23, 2017 Sydney Kodatsky (Chair, Answering TTP Foundation) virtually presented to the Entrepreneurial innovation Bootcamp in Rare Diseases hosted in Leuven, Belgium. One of the organizers included TTP researcher Prof. Dr. Karen Vanhoorelbeke.
On Saturday, September 16, 2017, one hundred and fifty registered participants took part in the 7th annual Walk to Answer TTP Together. Participants walked internationally, in their local communities to help raise life-saving awareness and funds for TTP!
The Ohio State University TTP/aHUS face-to-face meeting was made available to non-local participants to join virtually. On Tuesday October 10th, Dr. Cataland welcomed special guest Dr. James N. George, of the University of Oklahoma Health Sciences Center.
Walk to Answer TTP participant continues her awareness and fundraising for TTP. On September 22 Pam hosted a blood drive in Charlottetown. Pam has been participating in the annual Walk to Answer TTP Together since 2012. Thank you for your dedication to the cause Pam. Your efforts keep the conversation about TTP alive. Pam's story is available here.
Ashlee bravely shares her story for a local blood drive. Ashlee will be walking with the Community on September 16, 2017 and is featured on this year's walk awareness poster. Thank you Ashlee for being such an active advocate for TTP. Together we will improve the prognosis for all those affected by TTP. Local news coverage here at ksby.com.