NYC Marathon team raises $70,000 plus for EDS, Marfan research

A group of advocate athletes known as Team Victory ran last weekend’s New York City Marathon, raising more than $70,000 in support of The Marfan Foundation, an advocacy group that helps advance research and support people with Marfan syndrome and Ehlers-Danlos syndrome (EDS).

One of them was 66-year-old David Barnes of Williamstown, Massachusetts, who ran in honor of his wife and two daughters who have vascular EDS (vEDS). Barnes ran a few marathons when he was in his 20s — but it had been nearly four decades since he ran a full 26.2 miles.

“I joke with folks that I’m starting the New York City Marathon on November 1, as opposed to running it. We’ll see what happens,” Barnes said in a news story The Marfan Foundation published shortly before the race. “I’m looking forward to an energy from the crowd that will keep me going.”

Barnes did finish the marathon, with a time just shy of 5.5 hours — a pace slightly above 12 minutes per mile.

The Barnes family’s journey with vEDS has been going on for 15 years, starting when his father-in-law died from complications of a ruptured blood vessels. That led to his wife’s vEDS diagnosis at age 50. Two of their three daughters have since been diagnosed with the disease.

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Barnes said he was inspired to run the marathon this year by his youngest daughter, who ran on Team Victory last year, just months before she was diagnosed with vEDS.

“As our youngest was training for the 2025 Marathon, I thought, ‘Gosh, what a great idea. I’d like to try to do that,’” Barnes said in the news story. “My challenge, though, is that I’m in my mid-60s. But since the most recent positive diagnosis of our youngest gal, it’s more important than ever.”

Barnes said people who are close to someone with vEDS or Marfan may have “a slight feeling of helplessness or guilt.”

“You may think: ‘There’s nothing I can do,’” he said. “So, I’m doing this as both a show of support and to raise awareness. My little part may not pave the way to find a cure. But it’s a little bit like voting. If nobody votes, nothing happens. If everybody votes, then maybe something will happen.”

EDS refers to a group of disorders marked by abnormalities in the body’s connective tissue. Marfan syndrome is likewise a disorder affecting connective tissue. vEDS is a form of EDS characterized by abnormally fragile blood vessels, which can increase the risk of dangerous bleeding.

Since learning about his wife and daughter’s diagnosis, Barnes has been motivated to spread awareness about the rare disease.

“These conditions are probably more prevalent in the general population than many people realize,” he said. “And sometimes, like with my family, you may not know you have it for a very long time. But it can run in families, so if a parent has it, you have a 50-50 chance of inheriting it.”

Having a condition like vEDS “can be really difficult, but there’s certainly an opportunity to really lead a full life,” Barnes said.

“Once you know, you can adjust your life accordingly,” he said.