Connective Issues Spring 2023

Camp Victory for Kids o ff ers children and teens an opportunity to have an amazing independent camp experience, learn new skills, and make new friends. ★ Georgia: July23-28 ★ California: July 30-August 4 Camp Victory for Families provides traditional camp activities for individuals ages 5 and older. Parents have the opportunity to get involved in activities with their children and participate in an Ask-the-Expert session. All family members have the opportunity to meet others who truly “get it” and make new friends. ★ Georgia: October 13-15

CAMP VICTORY Making Memories to Last a Lifetime The Foundation is thrilled to o ff er a unique summer camp experience for kids and teens with Marfan syndrome, Loeys-Dietz syndrome, VEDS, and related conditions. The camp is designed to provide a safe and supportive environment where children and teens can make friends, learn new skills, and gain confidence. Scholarships are available. Eachcampo ff ers a wide range of activities, such as swimming, canoeing, archery, arts and crafts, campfires, and much more in a safe environment using only therapeutic and adaptive

equipment. Campers stay in accessible bunks, eat meals together, and receive their medications from the on-site nurse or physician. Our amazing volunteer camp counselors are members of our community including those a ff ected, medical professionals, Foundation sta ff , and family and friends of those with a condition. “One of the most valuable aspects of Camp Victory is the opportunity for children with these conditions to meet and

“Camp is adaptive so you don’t need to worry if you can do anything. My favorite part of camp was the friends I made. They were really cool. It’s a really fun experience and a really good time. I definitely recommend you go.” ~Christian Oviedo, age 15

GET CONNECTED: UPCOMING EVENTS May 13 Global Virtual Walk for Victory May23 HeartWorks New York City June3 Michigan Walk for Victory June3 New England Walk for Victory June3 New York Walk for Victory June 10 Pacific Northwest Walk for Victory June 11 Chicago Walk for Victory June 17 Philadelphia Walk for Victory July 13–16 39 th Conference July23–28 Camp Victory for Kids, Georgia July30– Camp Victory for Kids, August 4 Northern California For a full listing of events, visit Marfan.org/calendar .

connect with others who have similar experiences,” said Camp Victory Director Andrea Friedman, MSW, the Foundation’s client services manager. “Many children with Marfan syndrome, LDS, and VEDS feel isolated and alone, especially if they are the only one in their community with the condition. Camp Victory provides a supportive community where children can make lasting friendships and feel accepted and understood.” If you have a child with Marfan, Loeys Watch a video from our Camp Victory Director

Dietz, VEDS or a related condition, consider enrolling them in Camp Victory to give them a truly unforgettable summer camp experience! Siblings are welcome, too. To read the FAQs, apply for a scholarship, learn more, and register, visit Marfan.org/ marfan-camps .

Loeys-Dietz Awareness Month is June. Learn more at LoeysDietz.org.

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Marfan.org