For Bella Marin and her mom, Frances, Bella’s VEDS journey is a road traveled hand-in-hand. “I really don’t think I would have made it this far if it wasn’t for her,” Bella says of her mom. “She’s ...
The Marfan Foundation has awarded seven new research grants totaling $750,000 to support innovative approaches to understanding and treating genetic aortic and vascular conditions. The studies explore ...
A Marathon Nearly 40 Years in the Making: David Barnes Runs for the Marfan Foundation’s Team Victory
It’s been nearly 40 years since David Barnes last ran a marathon. In his 20s, he completed the Chicago Marathon twice and the New York City Marathon once. Now 66, he’s returning to the streets of New ...
The Marfan Foundation and its VEDS Movement division have a longstanding history of supporting research that advances scientific understanding of vascular Ehlers-Danlos syndrome (VEDS), including VEDS ...
Doré Schubert was diagnosed with Marfan syndrome at age two after experiencing a dislocated lens. By age 16, she underwent her first spinal fusion surgery for scoliosis. “Still, I lived a pretty ...
During Mental Health Awareness Month, we recognize that the impact of a genetic aortic or vascular condition extends beyond physical health. Medical trauma, recovery, uncertainty, and major life ...
The results are in: during Marfan and Loeys-Dietz Awareness Months 2026, the “Hello My Name Is” and MORE campaigns enabled community members to share their lived experiences in their own words.
The Marfan Foundation has been ranked #5 among the Best Nonprofits to Work For in 2026 by The NonProfit Times (NPT)—the highest ranking in the Foundation’s history. The annual list recognizes the top ...
Penelope shared her first-person story for Marfan Awareness Month. Hi! My name is Penelope Robles and I’m from the Philippines. This is the story of my 4-year-old daughter, Destinee Jaye, who was ...
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