How does Roe Nania feel about being named a ‘Hero with a Heart’ as part of the Marfan Foundation’s annual HeartWorks NYC Gala, to be held on June 9?
“I’m excited. A little nervous—I have to give a speech,” she says with a laugh. “But mostly I’m thinking, ‘How did I get here?’ It’s a little surreal. It feels strange to be honored for something that comes so naturally.”
If Roe finds the recognition surprising, no one else does.
Since 2017—when her older brother Angelo was hospitalized with a ruptured aneurysm and ultimately diagnosed with VEDS—Roe has become a tireless advocate not only for her family, but for the broader VEDS community. She has now supported multiple relatives through their diagnoses while also launching her own nonprofit, which provides college scholarships and raises money and awareness of vascular Ehlers-Danlos Syndrome.
Angelo died at age 49 from an aortic dissection, just 18 months after his initial hospitalization. In the years since, Roe has found a deep sense of belonging within the Marfan Foundation, VEDS Movement community—one that has embraced her in return.
“It really is a huge family—the most caring family you could hope for,” she says. “I don’t have children of my own, but I’m very family-oriented. I’m like a mama cub with my nieces and nephews and everybody else.”
That sense of connection is what keeps her going.
“What I found in this community is acceptance and love,” Roe says. “You’re all in the same pool, swimming in the same water. ‘I’ve got a life vest—do you want one? Come get on mine.’”
When Everything Changed
Roe, one of five siblings who grew up in Brooklyn, remembers the shock of Angelo’s diagnosis. “That’s when the genetic questions began,” she says. “Insurance did not cover testing before his death but did afterward, when the rest of the family underwent screening.”
Although Roe had many of the features associated with VEDS—including being double-jointed and bruising easily—she tested negative. Another brother tested positive, as did three of her nieces. “Wanting the best and longest life for my family has become my driving force,” she says.
Roe says it was particularly difficult for her three nieces—two teenagers and one in her early 20s—who were diagnosed with VEDS in October 2020. “We’re in the middle of the COVID pandemic, so the world was already in turmoil, and then they’re given what can feel like a death sentence,” she says. “And of course they’re teenagers, so it was a really wild ride. They’ve adjusted a little more now.”
Looking back, Roe now believes her father, who died in 1995 when she was just 20, likely had VEDS as well. “He went to the hospital with what he described as the worst charley horse imaginable—the pain was so intense he called an ambulance,” she says. Despite multiple attempts to restore blood flow to his leg, including a bypass, doctors were unsuccessful. “His veins are just falling apart—I’ve never seen anything like it,” a doctor told the family. Days later, he lost his leg and died of a pulmonary embolism just 10 days after his admission.”
Turning Grief Into Action:
For the past five years, Roe has organized a comedy night fundraiser near her Brooklyn home. “No, I’m not a comedian,” she says. “I hire professionals. I am funny, but working as an executive assistant in finance at a media company is my nine-to-five job.”
Roe notes that in its first year, the event raised $20,000 for the VEDS Movement. She later formalized the effort by creating a nonprofit organization. Today, BELOvEDS, A Nania Foundation, continues to host the annual comedy night and awards $1,000 college scholarships. “Recipients don’t have to have VEDS themselves—though they can—but at least one parent must have VEDS. We believe it affects the entire family,” she says.
Roe’s nieces, including one who lives with VEDS, serve on the scholarship committee. “When you read the essays from applicants, you realize how much they’ve been through,” she says. “It puts everything into perspective. There’s a stigma around diagnosis, and it’s easy to feel like you have the worst life—but these stories remind you, ‘I’m doing okay. today.’”
Spreading Awareness, Saving Lives:
Roe likes to spread awareness wherever she can. She serves on the VEDS Movement steering committee, and she and her extended family also participate in the Foundation’s Walk for Victory program. “I’ll school anybody on VEDS,” she says. “Anytime I’m at the doctor, I leave VEDS information in the waiting room.
Roe says that sometimes what people living with VEDS, or their families, need most is simply someone to listen. “I’m learning to ask—not just in this community, but in life—when someone starts to vent, ‘Am I helping you solve something, or do you just need me to hear you out?’ It’s been a learning process to know when to stay quiet and be present,” she says
Losing a brother and working so closely with the VEDS community has changed Roe. “It has been a roller coaster, but it definitely makes me appreciate life more,” she says. “It also makes me have more compassion for people because you just don’t know what someone else is going through. Life is hard. VEDS makes it harder. But for today, we live fully, right here, right now.”
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.