Thrive Connectors partner with community members every day to help more people Know. Connect. Thrive.
Every day, individuals and families around the world reach out to the Marfan Foundation with questions that can’t always be answered by a quick internet search.
Could this be Marfan syndrome?
Where do I find an experienced specialist?
What should I know before pregnancy?
How do I manage the anxiety that comes with this diagnosis?
For many of those callers and emailers, the first person they meet is Stephanie Amdur-Clark, MSN, RN, NP, Director of the Foundation’s Help & Resource Center.
Stephanie brings something unique to every conversation. She combines years of clinical experience as a pediatric cardiology nurse with firsthand experience supporting the people she loves.
A Personal Connection
Stephanie’s introduction to Marfan syndrome began when she met her husband, Micah. While she knew about his diagnosis early in their relationship, she didn’t fully understand the realities of living with the condition until an emergency hospitalization revealed he would need another aortic surgery.
“It was overwhelming,” she recalls. “There was fear and uncertainty, but I also witnessed his incredible resilience.”
Today, her perspective extends beyond being a spouse. Stephanie and Micah’s two children also live with Marfan syndrome, giving her firsthand insight into the many ways a connective tissue condition affects an entire family.
“Supporting them through the diverse and wide-ranging challenges they face on a daily basis related to their condition has given me a deeply personal understanding of the emotional and practical challenges families face, regardless of their relationship with this condition—spouse, sibling, child, or self,” she said. “I’ve seen firsthand the uncertainty that comes with managing a genetic condition, from navigating medical appointments and advocating for proper care to coping with anxiety about the future.”
That lived experience influences every interaction Stephanie has through the Help & Resource Center. Families aren’t just speaking with a healthcare professional, they’re connecting with someone who understands both the medical complexities and the emotional realities of living with a connective tissue condition.
Compassion Backed by Clinical Expertise
Before joining the Marfan Foundation, Stephanie spent much of her nursing career caring for children and families in pediatric cardiology.
“The Help & Resource Center felt like a natural extension of both my professional and personal life,” she said.
Her clinical background allows her to help people understand complex medical information, prepare for appointments, and navigate difficult healthcare decisions. At the same time, living with Marfan syndrome in her own family gives her a level of empathy that can’t be taught.
“You don’t have to navigate this alone.”
Stephanie Amdur-Clark
“I understand the uncertainty, the fear, and the day-to-day realities of living with a connective tissue condition,” Stephanie said. “I strive to support families not only with information, but with compassion, reassurance, and a genuine understanding of what they’re going through.”
More Than Answers
Since its founding in 1992, the Marfan Foundation’s Help & Resource Center has become a trusted source of information and support for thousands of individuals and families each year.
The questions Stephanie and her team receive are as varied as the people they serve.
Some are searching for a diagnosis or wondering whether a family member should be evaluated. Others need help finding specialists with expertise in Marfan, Loeys-Dietz, VEDS, Stickler, and related conditions.
Families often ask about:
- Genetic testing and what the results mean
- Pregnancy planning and family planning
- Physical activity and exercise recommendations
- Recovery after surgery
- Pain management
- Coordinating care among multiple specialists
- Mental health and emotional support
- The latest medical guidelines and research
“Our community reaches out from across the United States and around the world,” Stephanie said. “Every question is important because every person’s situation is different. And sometimes, there are people who simply need someone to listen. What stands out to me is the trust people place in us during those intimate and sometimes desperate moments. Being able to help someone feel even a little less overwhelmed or alone stays with me long after the conversation ends.”
For Someone Who’s Newly Diagnosed
Receiving a diagnosis can bring relief, fear, confusion, or all three at once.
Stephanie wants people to know those feelings are normal.
“You don’t have to navigate this alone,” she said. “Take things one step at a time. Lean on family, friends, healthcare providers, and resources like the Help & Resource Center. You deserve to feel supported, informed, and empowered. You don’t have to know everything right away.”
A Resource and a Relationship
While the Help & Resource Center provides trusted information, referrals, and educational resources, Stephanie hopes people leave every interaction with something even more meaningful.
“I hope they feel heard, supported, and validated,” she said. “We want people to know they have someone who understands what they’re going through and can listen without judgment.”
That philosophy reflects what the Help & Resource Center has always been about, not simply answering questions, but helping people feel connected and supported throughout every stage of their lives.
Have a Question? Visit Marfan.org/ask.
Whether you’re newly diagnosed, looking for an experienced specialist, trying to better understand your condition, or simply need someone to point you in the right direction, The Marfan Foundation’s Help & Resource Center is here to help. The Help & Resource Center covers Marfan, Loeys-Dietz, VEDS, and related conditions.
Susan Benvenuti is the VP, Integrated Marketing & Communications for The Marfan Foundation. She enjoys getting to know community members and sharing their unique stories. If you would like to share yours, we’d love to hear from you - get started by emailing sbenvenuti@marfan.org.