Connective Issues Spring/Summer 2025

Why We Give Supporting Hopeful Futures

“Isabella had unexplained health issues since birth, but when we finally got the diagnosis in April 2021, it changed everything,” said dad Kevin. At age eight, Isabella was diagnosed with Vascular Ehlers-Danlos syndrome (VEDS) after her mother Heidi could clearly see her veins along her jawline. Isabella, who had been active with jiu-jitsu and baseball and enjoyed roller coasters and trampolines, had to shift her activities significantly.

“Her condition is always in the back of our minds,” said Kevin. “We had to rethink everything, from family vacations to everyday activities. Now, we always need to consider what medical facilities and help are nearby.” At first, Kevin and Heidi only had limited information about their daughter’s condition. Then they dis covered the VEDS Movement online, a division of the Marfan Foundation. They attended their first Marfan Foun dation Conference in 2022 where, for the first time, they were able to meet others in the VEDS community. Since then, they have become more involved, attending symposiums,

come a monthly Foundation donors in an effort to help educate healthcare providers and further research.

“Because VEDS is so rare, we found local doctors and emergency person nel weren’t familiar with it so there is a need to spread awareness as well as advocate for those affected,” Kevin said. “The Foundation provides critical support and resources to raise awareness, fund the latest research, learn from those affected, and advocate for us within the medical community. This is so critically important to ensure adequate care in life-threatening situations as well as help navigating the day-to-day challenges we all face in life.” The Greens also acknowledge the importance of community support. “When we first got the diagnosis, we felt very afraid and alone,” said Kevin. “Who else had this disease? Who understands what we’re going through? The VEDS Movement provided us with the knowledge that there are others out there who can share their experience and support, and we want to provide the same from our end.” Kevin is hopeful his family’s support will help contribute towards a cure or lasting treatments that can improve the lives of people living with VEDS. “If we can find a way to prevent fatal emergencies from occurring, especially in children, that would be so wonderful,” he said. To make an impact through donation or legacy giving, please visit Marfan.org/give . To make your contribution monthly, simply click the “donate now” button and choose monthly. For questions about giving, please contact Deborah Goodman, Senior Vice President, Donor Relations, at dgoodman@marfan.org.

webinars, and other conferences. Heidi also serves on the steering committee for the VEDS Movement, and their family actively participates in fundraising, by reaching out to friends, loved ones, and colleagues for support. In addition, the Green family made the commitment to be

8

Marfan.org