Marfan Family Camp | The Marfan Foundation

Marfan Family Camp

Summer camps are a rite of passage for many children -- where they can learn independence and grow in a safe environment. A regular day camp or sleepaway camp is not always practical or safe for children with Marfan or a related disorder. 

Now, children with Marfan and related disorders can have a camp experience in an environment that is safe for them. It also enables them to create connections with other kids who are just like them and form meaningful bonds that can last a lifetime.

Marfan Family Camp offers programming for children and teens ages 5 to 18 including traditional summer camp activities, such as archery and paddleboats, arts and crafts, mini-golf and swimming, as well as other standard camp activities that were modified so that all could participate. Parents have the opportunity to participate in some activities with their children. At other times, they participate in professionally-led support groups.

Marfan Family Camp includes accommodations for the entire family, as well as all meals. A Marfan-knowledgeable nurse is onsite throughout the weekend.

Both of my kids (the one who has Marfan and the one who doesn’t) had a blast! Hadley liked meeting other girls her age with Marfan. As a parent, it was great at night to see that she wasn't the only one who needed to take medicine - something we often try to do discretely. Becky Gunn, of Atlanta

Of course one can make friends at any sort of camp. But, to make a friend who understands Marfan is something Bobby wouldn't get anywhere else, except perhaps at conference. – Jay Elliott, Bobby’s dad, of St. Louis

I loved doing things I don't usually get to do, like archery, and it was so fun meeting new friends with Marfan syndrome. No one even asked me why I needed a wheelchair to go long distances! – Cassie Jennings, 10, of Madison, New Jersey

It was important to have camp so that the kids could do things that they might not have had exposure to if they can't go to a traditional camp. Learning new skills and trying new activities is not only fun, but shows the kids that they may have talents or interests they didn't know about. It was also a great place for the kids to bond and talk to each other in a fun, relaxing atmosphere. The parents also got to talk and learn from each other and have those conversations that only other parents of kids with Marfan can truly understand. Alix Jennings, Cassie’s mom

The next Marfan Family Camp will be held on April 20-22, 2018, at Twin Lakes Camp in Winder, GA. For complete details and to register, please click here