Brooklyn Woman Turns Family Tragedy Into VEDS Lifeline

Rosemarie Nania still remembers the call that changed everything: her brother Angelo, just 49, hospitalized with a ruptured aneurysm in 2017. Eighteen months later, he was gone, and genetic testing revealed vascular Ehlers-Danlos Syndrome had run through their Brooklyn family for generations.

Instead of retreating into grief, Roe did something remarkable. She dove headfirst into a community she never knew existed, becoming a fierce advocate for families facing the same devastating diagnosis.

VEDS is a rare connective tissue disorder that weakens blood vessels and organs, making them prone to sudden rupture. Many doctors have never encountered it, which means families often face diagnosis only after tragedy strikes.

Roe tested negative for VEDS, but her brother and three nieces tested positive. Looking back, she believes her father, who died in 1995 after his veins "just fell apart" during a routine hospital visit, likely had it too.

Rather than accept the fear and isolation that often surrounds rare disease, Roe created BELOvEDS, A Nania Foundation. The nonprofit hosts annual comedy nights near her Brooklyn home that have raised over $20,000 for research and awareness.

The foundation awards $1,000 college scholarships to students from VEDS families, recognizing that the condition affects everyone in the household. Her nieces, including one living with VEDS, serve on the scholarship committee and review applicant essays together.

"When you read what these kids have been through, it puts everything into perspective," Roe says. The scholarship program reminds families they're not alone in their struggle.

The Ripple Effect

Roe's impact extends far beyond fundraising numbers. She serves on the VEDS Movement steering committee and organizes family participation in Walk for Victory events.

Her guerrilla awareness campaign involves leaving VEDS information in every doctor's waiting room she visits. That simple act could save lives by helping physicians recognize symptoms before catastrophe strikes.

She's also learned that sometimes families just need someone who understands. "I'm learning to ask when someone starts to vent: Am I helping you solve something, or do you just need me to hear you out?" she explains.

This June, the Marfan Foundation honored Roe as a "Hero with a Heart" at their annual HeartWorks NYC Gala. Her response was characteristically humble: "It feels strange to be honored for something that comes so naturally."

But to the VEDS community, there's nothing surprising about the recognition. Roe describes them as "the most caring family you could hope for," a place where everyone shares life vests in the same turbulent water.

Losing Angelo transformed how Roe sees the world. "It definitely makes me appreciate life more and have more compassion for people because you just don't know what someone else is going through," she reflects.

For families navigating VEDS today, Roe's message is simple but powerful: life is hard, this condition makes it harder, but right here and right now, we choose to live fully.