Connective Issues Winter 2024

“Stars Align” at Camp Victory Every young person deserves the chance to spend time with peers. Living with a genetic aortic and vascular condition can feel lonely – especially for young people. The aim of our Camp Victory program is to help kids and families connect with others experiencing similar journeys and to especially provide children and young adults with the chance to enjoy a traditional camp experience within the safety net of on-site medical supervision. “Before attending Camp Victory, my son Jack had never met someone outside our family with LDS,” said Brenda whose children Jack and Willa took part. “There is an ease that comes with being together with other families who share the experience of living with this condition.” In 2023, the Foundation hosted Camp Victory for Kids and Camp Victory for Families in Georgia and California. Campers were able to participate in fun indoor and outdoor activities like swimming, games, fishing, hiking, rock wall climbing, crafts, and much more. Don’t miss out in 2024 – make plans now to attend Camp Victory in Georgia or California. Watch for details coming soon at Marfan.org/Marfan-camps . Camp Victory for Kids ★ July 21-26, 2024 –Georgia ★ Dates TBD – California Camp Victory for Families ★ September 20-22, 2024 –Georgia ★ Dates TBD – California

Our family discovered our Loeys-Dietz diagnoses in 2015, and while we have been focused on managing our care, we have not really had the opportunity to connect with other members of the LDS community. The stars aligned for us to attend Camp Victory together in October. While my kids have gone to di ff erent camps, including one for children living with heart conditions, I’ve never had an experience like Camp Victory before! As an adult with LDS, it meant a lot to me as well. In addition to all of the activities, I truly enjoyed the opportunity to speak with the doctor. We loved getting to experience camp with so many others who live with this condition. There’s just no way to verbalize how much that helps. Camp Victory exceeded our expectations 100%. We would love to come back to Camp Victory. It was perfect! Brenda

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