The second International Living Better Symposium in London brought together more than 200 people on October 10 for a day of learning, shared experiences, and connections across the Marfan, Loeys-Dietz, VEDS, and Stickler communities.
“It was incredibly heartwarming to see attendees engage so thoughtfully with our expert speakers and connect with others in the community. Their appreciation, understanding, and sense of comfort in knowing they are not alone were truly moving,” said Eileen Novins, Chief Global Officer at The Marfan Foundation.
The free symposium reached capacity and was organized by The Marfan Foundation in partnership with Annabelle’s Challenge, Marfan Trust, The Aortic Dissection Charitable Trust, and Stickler Syndrome UK. Terumo Aortic serves as the Foundation’s Global Champion Sponsor this year.
Welcoming the Stickler Community
For the first time, the symposium welcomed the Stickler syndrome community in partnership with Stickler Syndrome UK. Stickler syndrome is a group of genetic conditions that affects connective tissue, specifically collagen. The condition is characterized by facial abnormalities, ocular problems, hearing loss, and joint problems.
The program featured Stickler experts, including Dr. Martin Snead, an ophthalmologist from Cambridge, and Steven Goudy, MD, MBA, FACS, of Old Dominion University, president of the American Cleft Palate Association.
“We look forward to expanding our programs and services for the Stickler syndrome community in the coming year and continuing to ensure that individuals and families have access to the knowledge, resources, and support they need,” Novins said.
A college student from Kent, England, Amelia Aves lives with Stickler syndrome. She sat on the Personal Perspectives panel at the symposium and shared her story.
Amelia is currently working to raise awareness of Stickler among both the public and medical professionals. “I was looking forward to meeting other people with the same condition and to hear about the new research that’s being done.”
Learning, Sharing, and Building Connections
Attendees heard from leading experts on the latest research, advances in care, and the challenges of living with connective tissue conditions. The networking lunch offered valuable opportunities to meet others who share similar experiences, while interactive breakout sessions gave attendees the chance to ask questions and learn more about specific topics, from aortic health and exercise to family planning, pain management, mental health, and caring for children with these conditions. The day also included personal perspectives and discussions about self-advocacy.
Herman and Charlotte Sevume attended the symposium to support their daughter, Amiyah. As they explained, there is always something new to learn, and they wanted to make the most of the opportunity to gain knowledge that could help them support her.
Continued Collaboration:
Elena Cervi, MD, PhD, of Great Ormond Street Hospital in London ran a breakout session on Managing VEDS in Kids. She emphasized the importance of strengthening collaboration to reach even more families. “The Marfan Foundation has done amazing work providing information and support to families in the U.S. It’s important that we work together to strengthen those efforts in the UK and Europe,” she said.
“The enthusiasm and meaningful connections we witnessed at the London symposium reinforced the importance of collaborating with like-minded organizations around the world to ensure this community has the knowledge, resources, and support it needs,” said Novins. “We were honored to partner with UK-based medical experts who are dedicated champions of the connective tissue community, as well as U.S. experts who traveled to London to share their knowledge and lead breakout sessions. Our commitment to the UK community has never been stronger, and we look forward to returning!”
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.