John DeMasi, MD

Roles

After John was diagnosed with VEDS in 2011, he co-founded the non-profit organization, Fight vEDS, with his brother Dave. Together, they provided information and support to VEDS patients, supported research, and launched a genetic testing program for those struggling to get diagnosed. John was a dedicated, passionate physician and Advisory Board member of the VEDS […]

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Peter Byers, MD

Roles

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Peter H. Byers, MD, Professor of Pathology and Professor of Medicine (Medical Genetics), is a graduate of Reed College, in Portland, and Case Western Reserve University School of Medicine.  He completed two years of internal medical residency at UCSF, then was a Research Fellow at the National Institutes of Health where he studied the way that collagen molecules […]

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Dave DeMasi

Roles

Dave has been involved in Vascular Ehlers-Danlos since 2013. He is a co-founder of the non-profit FIGHT vEDS, along with his brother John, through which they support research and provide information and support to VEDS patients. Dave is a member of the Advisory Group for the VEDS Collaborative, and has continued his dedication to the VEDS community in John’s honor, after his passing in February […]

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Katie Wright

Roles

Katie (aka Translucent One) was diagnosed with VEDS in 2017 and started a YouTube channel, ‘My Life with VEDS’ shortly after diagnosis to raise awareness of the condition. After many people reaching out to her on this channel, she decided to start a podcast called ’Staying Connected’, which features others sharing their stories with VEDS. She is on the VEDS Collaborative Advisory Board, and participates in the VEDS Collaborative with […]

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