Connective Issues Spring 2018

QUALITY OF LIFE

NEW CAMPING OPPORTUNITY Normalizing Childhood for Kids with Marfan and Related Disorders

swimming, boating, archery, arts and crafts, dances, campfires, and much more in a safe environment using therapeutic and adaptive equipment. When your child shares these experiences with their peers, they create memories that can change them forever. “We attended the Family Camp weekend in 2017. Ole felt so at home with others who experience life like he does.” “When our family learned about another opportunity for Ole to participate with kids who have Marfan syndrome, we jumped at the chance to send him to Camp Victory!” said Heather Johnson, of Pittsboro, NC. “We attended the Family Camp weekend in 2017. Ole felt so at home with others who experience life like he does. He made life-long friends. Thanks to these friendships, Ole knows that he will be okay. We aren't able to send Ole to many camps because, even if they can accommodate his health restrictions, Ole feels left out. Many thanks to The Marfan Foundation for providing this summer

OLE JOHNSON, RIGHT, WITH HIS NEW CAMP FRIEND, LIAM NELSON.

Summer camps are a rite of passage for many children— where they can learn independence and grow in a safe envi- ronment. Many parents in our community have expressed sadness that a regular day camp or sleepaway camp is not always practical or safe for children with Marfan or a related disorder. Thus, their kids have had to miss out on the camp experience. But not anymore. Last year, the Foundation piloted a family camp weekend, and the response was so positive that we expanded our camping program this year. Our second family camp was held in April 2018 and was even bigger and better than last year. And, for the first time, we are offering Camp Victory, a week-long camp just for children at the Twin Lakes Dream Camp, 45 minutes outside Atlanta in Warm Springs, GA. Camp Victory offers children and teens, ages 7 to 18, an opportunity to have an independent camp experience. Children participate in all camp activities, such as lake

camp opportunity!” The registration fee for Camp Victory is $250 per child. There is a special discounted rate of $125 each for the first 20 children who register. The fee covers accommodations in air-conditioned cabins, meals, and all camp activities. The camp has flat paved paths and there is only a short distance between activity areas. The camp meets all federal accessi- bility standards and guidelines. A nurse who is experienced with all aspects of connective tissues disorders will be available at all times. Parents are required to provide us with completed medical forms so we have all the information to keep your child healthy and safe at camp. If you have any questions or medical concerns, please contact Susan Leshen, the Foundation’s senior director of patient and program services and volunteer engagement, sleshen@marfan.org.

4 Marfan.org