On October 25, the Marfan Foundation and Cincinnati Children’s Hospital Medical Center (CCHMC) hosted the Cincinnati Regional Symposium: Living Better with Marfan, Loeys-Dietz, and VEDS, a day devoted to education, empowerment, and community for individuals and families impacted by genetic aortic and vascular conditions.
“When families, patients, and medical professionals come together like this, everyone learns,” said Dr. Nicole Brown, Co-Director, Marfan and Aortic Disease Clinic at CCHMC. “It’s not just about sharing the latest science; it’s about understanding lived experiences, building trust, and ensuring that care continues seamlessly through every stage of life.”
The symposium featured presentations from leading medical experts on topics central to lifelong care. Sessions focused on both adults and children, and CCHMC offered a separate program for children.
The expert lineup began with Professional Advisory Board member Shaine Morris, MD, MPH, Medical Director of the Cardiovascular Genetics Program at Texas Children’s Hospital, who shared the latest on aortopathy and how understanding of these conditions continues to evolve.
The rest of the program speakers were healthcare professionals from CCHMC including Nicole Brown, MD, who gave insights into family planning and pregnancy risks and options; Ashley Neal, MD, and Alissa Meek, RN, BSN, CPN, who offered practical strategies for making the often-challenging transition from pediatric to adult care; and K. Nicole Weaver, MD, who presented updates on genetics and what current research means for families.
Complementing the medical talks was a Personal Perspectives Panel, where community members shared their experiences living with Marfan and Loeys-Dietz. The panel included Luke from Tennessee, Kenzie and her mother Rebecca from West Virginia, and Colette from Cincinnati.
For many attendees, the symposium offered both learning and the chance to make new friendships. Diana Kafantaris from Indianapolis, whose family has five members diagnosed with Loeys-Dietz syndrome, said the event reinforced the importance of staying connected.
“We had a wonderful experience,” Diana said. “We got a good review of what we already knew and also learned updates regarding research and best practices. My husband and I are always looking for opportunities to educate ourselves about LDS and to help our children connect with others who share similar experiences. Meeting new families reminded us how important it is to stay engaged with the CTD community and continue attending events like this.”
The Marfan Foundation will host its next Living Better symposium in Louisville, KY on March 28. To be updated on educational programming, please make sure you are subscribed to receive our email at Marfan.org/subscribe.
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.