ABOUT
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 to him that most patients with vEDS wished 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 the non-profit 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 focuses on three core initiatives:
1
Bringing Up-To-Date Information to Patients
FIGHT vEDS provides information about vEDS in a clear way, making it easy to understand without a medical background. To date, FIGHT vEDS provided information to 22,000+ visitors from 60+ countries and has shared posts & reflections with ~3,000 blog subscribers - a wide reach in a rare disease.
2
Promoting Low-Cost Genetic Testing
FIGHT vEDS partners with a leading genetics testing lab, Invitae, to offer rapid, low-cost genetic testing. The program helps patients get tested in 4-6 weeks for between $50 and $375 - a dramatic improvement from the 6+ months and thousands of dollars to get a diagnosis through traditional methods. Over 1,000 patients have used FIGHT vEDS to pursue testing options.
3
Advancing Research
FIGHT vEDS aims to advance research in this rare condition, raising seed funding to support early-stage research and convening patients and researchers to advance the science.
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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).
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In 2017, FIGHT vEDS partnered with Dr. Sherene Shalhub and Dr. Peter Byers from UW to form the vEDS Collaborative. The Collaborative consists of patient organizations and researchers that support research efforts. ​
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FIGHT vEDS continues to support advancing research and is currently working with researchers to support the first clinical trials ever conducted for vascular EDS.
www.fightveds.org is maintained by Green Ivy Health Inc., a Massachusetts Nonprofit Corporation.