Connective Issues Fall 2024

CAMP VICTORY 2024RECAP Six years ago, the Foundation began o ff ering Camp Victory to provide a fun, safe environment where kids and families a ff ected by Marfan, Loeys-Dietz, VEDS, and other genetic aortic and vascular conditions could have a traditional sleep-away camp experience that is medically monitored and accessible for all. “For many children, attending the kids’ camp is their fi rst time meeting someone with a similar condition,” said Andrea Friedman, MSW, client services manager and camp director for the Foundation. “It’s amazing to see them create bonds and lasting friendships and be more independent, learning new skills, and building con fi dence.” Camp Victory for Kids in Georgia and California, held in July and August respectively, hosted 38 campers, 20 volunteer counselors, fi ve Foundation sta ff members, and fi ve medical sta ff of volunteer nurses and medical directors. Camp Victory for Families will also be held in both states this fall (registration is closed). This weekend-long camp is designed for the entire family to experience activities and meet other families impacted by genetic aortic and vascular conditions. We will be hosting Camp Victory in the summer and fall of 2025. Watch for information posted soon on our website or reach out to Andrea, afriedman@marfan.org. “Camp Victory is such a special experience for kids with vascular conditions and their siblings! My kids have participated two years in a row, and it is their favorite thing of summer!” ~ Katherine Dowdney, mom of Emerson and Margot who have attended Camp Victory for Kids in California  Emerson (right), who has VEDS and his sister, Margot Through the generosity of our donors, scholarships were provided to half of the 2024 campers. If you would like to support a camper, please visit Marfan.org/donate . Be sure to specify you would like to support Camp Victory. Thank you!

WALK FOR VICTORY BUILDING COMMUNITY and Raising Essential Funding

The Walk for Victory program has become a unifying and impactful event over the years, bringing together individuals and families a ff ected by genetic aortic and vascular conditions. Each walk is designed to foster a sense of community while raising critical funds for research, education, and support. Thanks to our generous supporters and sponsors, last year’s walk season featured 22 walks across the country, raising a record $1.3 million with more than 5,000 registrants and 282 teams. “The Victory Walk has been a part of our grief and healing journey for our LDS a ff ected family and Lanky Legends Team of friends and family in support,” said Katie Lance whose husband and son have Loeys-Dietz syndrome. “The journey with these vascular diseases is a battle (often unseen and misunderstood) that we cannot fi ght alone. Gathering together is a tangible reminder that we are seen and understood, we gain strength in unity and can persevere together with love and hope.” Highlights from last year include two new locations in Denver and Pittsburgh. Pittsburgh set the record for most attendees for a fi rst-time walk. Houston took the honors for top fundraising walk with 736 registrants and more than $140K raised. The Walk for Victory events o ff er a non-athletic walk, fun family activities, award ceremonies, and opportunities to connect with other community members and healthcare providers. The spirit of the walks centers on community involvement, awareness, and advocacy, making each walk a pivotal part of the Foundation’s outreach. Find a Walk for Victory near you at Marfan.org/walk.

 The Lance family’s Team Lanky Legends at the Michigan Walk for Victory

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