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 York for another 26.2 miles — this time with a deeply personal motivation.
David’s wife and two of his three adult daughters live with the life-threatening genetic connective tissue condition, Vascular Ehlers-Danlos syndrome (VEDS). Now, as the oldest member of this year’s Team Victory, he’s among a group of runners taking on the TCS New York City Marathon to raise awareness and support the Marfan Foundation’s mission. Last year, nine Team Victory runners raised more than $55,000.
“I think if you’re close to or connected to someone with VEDS or Marfan, there’s sometimes a slight feeling of helplessness or guilt,” says the Williamstown, Mass., resident. “You may think: ‘There’s nothing I can do.’ 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.”
The discovery that VEDS runs in his wife’s family has unfolded over the last 15 years. When her father died of an aortic dissection, she began looking into whether there might be a genetic connection. She was 50 at the time when she was diagnosed.
Since then, his oldest daughter tested positive for VEDS in her mid-20s, and his youngest daughter, now 25, who ran the NYC Marathon last year for Team Victory, was diagnosed this past summer. The news was difficult for his family. His middle daughter, happily, tested negative.
“As our youngest was training for the 2025 Marathon, I thought, ‘Gosh, what a great idea. I’d like to try to do that.’ My challenge, though, is that I’m in my mid-60s,” says David. “But since the most recent positive diagnosis of our youngest gal, it’s more important than ever.”
He was already pretty active, working out five or six days a week, so the training overall was not too onerous, just a more intense focus on running. “It’s actually been a great experience,” David says.
“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,” he says. “I’m looking forward to an energy from the crowd that will keep me going.”
For David, the marathon is about more than reaching the finish line. It’s also an opportunity to raise awareness of VEDS, a condition most people he speaks to have never heard of.
David hopes that greater awareness will help people recognize the importance of genetic testing and understand their options. “Once you know, you can adjust your life accordingly,” he says, noting that some people may not need to make major changes. “But these conditions are probably more prevalent in the general population than many people realize. 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.”
“These conditions can be really difficult, but there’s certainly an opportunity to really lead a full life.”
If you’d like to support this year’s Team Victory at the New York City Marathon, click here
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Olivia Abel has been a strategic communications and editorial professional for more than 25 years. A passionate storyteller, she’s worked as a reporter at Vanity Fair and People magazines, written freelance business stories for The New York Times and spent a decade as Editor-in-Chief of Hudson Valley magazine. Olivia shares the stories of those affected by genetic aortic and vascular conditions in her current work as director of Integrated Marketing Communications at the Marfan Foundation.