History of FIGHT vEDS

Focused on arming patients with information to fight vEDS

In 2011, John DeMasi was diagnosed with vascular Ehlers-Danlos Syndrome (vEDS) after an arterial event at the age of 25. In meeting other patients, it became clear that most patients with vEDS wish they knew more about the disease, how to treat it, and what promising research is underway.

As both a doctor and a patient, John was uniquely positioned to launch FIGHT vEDS, a nonprofit intended to arm vEDS patients and physicians with up-to-date information on how to fight vEDS and to provide information about promising new research and treatments. Since its founding, FIGHT vEDS has focused on three core initiatives:

Bringing Up-To-Date Information to Patients 

John published information about vEDS in a way that patients could understand. In its first 2 years of operation, FIGHT vEDS provided information to over 10,000 visitors from 50+ countries and shared posts & reflections with ~1,000 blog subscribers - a wide reach in a rare disease.

Promoting Low-Cost Genetic Testing

FIGHT vEDS partnered with leading genetics testing lab, Invitae, to offer rapid, low-cost genetic testing. The program FIGHT vEDS established can help patients get tested in 4-6 weeks for often as low as $50 - a dramatic improvement from the 6+ months and thousands of dollars to get a diagnosis through traditional methods. Over the past year, 100+ patients have used FIGHT vEDS to pursue testing options.  

Advancing Research

John focused on advancing research in this rare condition, raising seed funding to support early-stage research and convening patients and researchers to advance the science. 

 

In 2015, John and his brother Dave organized the first International Research Symposium on vEDS in partnership with researchers from the University of Washington (UW). 

In 2017, FIGHT vEDS partnered with Dr. Sherene Shalhub and Dr. Peter Byers from UW to form the vEDS Collaborative, a group of patient organizations and researchers convening to define and support research efforts.

FIGHT vEDS is currently working with researchers on the first clinical trials in vascular EDS.

www.fightveds.org is maintained by Green Ivy Health Inc., a Massachusetts Nonprofit Corporation established by John and David DeMasi.

Stethoscope on the Cardiogram
 
 
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