Children who have rare diseases have options when it comes to summertime adventures. Looking to get your child signed up? Here’s what’s on tap for this summer in the United States:
Hemophilia and Bleeding Disorders
For children who have hemophilia and other bleeding disorders, the National Hemophilia Foundation lists more than 20 summer camps across the United States. Will it be Camp Klotty Pine in Wisconsin, Camp Wannaklot in Georgia or Camp Hot to Clot in Pennsylvania? NHF lets parents sort camps by their educational offerings, recreational options and eligibility, such as whether families can camp together or whether siblings are invited.
Parents also might like to know about an organization called the North American Camping Conference of Hemophilia Organizations. The group meets annually to trade ideas and plan camp experiences that are safe, educational and entertaining.
Camps for kids with bleeding disorders often incorporate skill building, such as learning about self-infusion. Camps, including Camp Hot to Clot in western Pennsylvania, award the “Big Stick” to campers who successfully complete a self-infusion from start to finish.
Camp Hot to Clot works hard to create an atmosphere of positivity and encouragement, said Cheryl McShea, a physical therapist who works with hemophilia patients and has several years of experience working at the summer camp. They call it “challenge by choice,” she said. Kids also pair up to learn from one another.
All Rare Disease
The National Organization of Rare Disorders partners with the Hole in the Wall Gang to offer a family camp event from May 31 to June 4. The session is fully booked with a wait list, Hole in the Wall Communications Director Beth Starkin said. But registration just opened for the Fall Rare Disease Family Weekend from October 19-21. The camp experience is free for families, but space is limited.
If the name of this Connecticut camp sounds familiar, it could be because of its famous founder, actor Paul Newman who died in 2008. He launched the camp in 1988 and it continues to serve 20,000 children and family members through nine different programs. The Hole in the Wall Gang has a simple premise: that “every child, no matter their illness, could experience the transformational spirit and friendships that go hand-in-hand with camp.”
Primary Immunodeficiency Diseases
The Immune Deficiency Foundation offers a unique summer experience, especially for teens called an IDF Teen Escape. Two weekend getaways are planned for this summer – one in Minneapolis, Minnesota on June 23-24 and another in Chandler, Arizona on July 14-15.
Young people ages 12 to 18, who have been diagnosed with PI, are invited to attend the program, which mixes fun and entertainment with practical information about how to live with a primary immunodeficiency. In addition to meeting others who have the same health challenges, participants focus on leadership and skill-building that will empower them to manage their healthcare and achieve their life goals. Medical Q&A sessions are offered in a relaxed atmosphere. Parents attend, but follow a different track.
Visit the IDF website for registration information.
Have a great summer, everyone!