John DeMasi

In Memory

In memory of John DeMasi

john demasi

We are sorry to share the very sad news that John DeMasi passed on 23rd February 2020. John and his brother Dave founded the Fight vEDS organization and was the starting force behind the vEDS Collaborative Group.

Our thoughts are with John’s family and all our colleagues and dear friends at the vEDS Collaborative.

"John’s diagnosis motivated him, and he used his unique position as a physician and a patient to advocate for patients affected by vEDS. In 2017, John and his brother David launched a nonprofit -- FIGHT vEDS. John used this platform to educate over 10,000 visitors from more than 50 countries about the disease in a way that patients and their families could easily understand.

Recognizing the obstacles patients had receiving an accurate diagnosis, John launched a genetic testing program in partnership with a leading genetics lab. This helped numerous patients across the world obtain rapid, affordable genetic testing.

John worked tirelessly to advance vEDS research. He partnered with researchers from the University of Washington to launch the first vascular Ehlers-Danlos Syndrome International Research Symposium and to establish the vEDS Collaborative. This collaborative consisted of seven nonprofits and dozens of stakeholders that convened via monthly meetings and annual conferences to establish a plan to ultimately develop a cure."

Rest In Peace John.