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Camp Footprint Gives Kids with CMT Chance to Connect with Peers

Camper with her "Camp-in-a-box"

Happy Camp Footprint camper

Kids have until May 15 to register for only summer camp solely for kids with CMT

GLENOLDEN, PENNSYLVANIA, USA, May 4, 2021 / -- Kids with Charcot-Marie-Tooth disease have until May 15 to sign up for the sixth session of Camp Footprint, the country’s only camp solely for kids with the degenerative neuromuscular disease. The 2021 session of Camp Footprint will be held online from Monday, August 2 to Friday, August 6.

Just one in 2,500 people has the rare and incurable genetic disease, which damages the long nerves to the hands and feet, resulting in atrophy in the muscles around them. Kids with CMT have weakness and numbness in their feet and lower legs. It affects their walking and balance and can eventually result in deformity. Like anything that makes a kid different, it can also affect self-esteem.

Children with CMT experience physical limitations daily. For many, walking is difficult and running impossible. Even something as mundane as picking a coin up off a table can be challenging. Kids with CMT are often excluded from PE at school, afterschool sports and neighborhood pick-up games. They are almost always chosen last for team sports.

Sponsored by the Charcot-Marie-Tooth Association (CMTA), Camp Footprint gives kids from 10 to 18 the chance to feel understood and to blend in. Former camper/now counselor Erin Black, 19, explained it this way: “Imagine walking around with a backpack full of bricks for 360 days, but then one day someone tells you that you can take it off for five days and feel free, joyful and empowered. For one week CMT isn’t an ugly, painful neurological disease—it’s a superpower.” In non-pandemic years, Camp Footprint (motto “One Step at a Time”) gives kids with CMT a chance to participate in all the regular camp activities like swimming, horseback riding, campfires, and music. Strangers quickly become friends because they share the same physical and emotional challenges.

In 2020, Camp Footprint took place on Zoom, thanks to the CMTA’s Camp-in-a-Box, which held everything necessary for a typical camp experience—singing, crafts, drumming, a powder battle, pizza night, a dance and even a traditional campfire, complete with flickering lanterns and S’more Pop-Tarts. In 2021, camp will once again be virtual, with Zoom sessions running from 9 am to 10 pm, with a break between 5 pm and 7 pm. This year’s campers will be searching for “Queen Corona,” who has stolen the keys to the real-life Camp Footprint and locked them out. Campers will spend the week looking for clues to the keys’ whereabouts so they can get back to sleepaway camp in Pennsylvania in 2022.

According to a study published in Children’s Health Care (Volume 44, Issue 1), camps for children with disabilities provide fantastic social and self-affirming opportunities for campers that just can't be matched outside of camp. The study, Examining Perceptions of Social Acceptance and Quality of Life of Pediatric Campers with Physical Disabilities, found that campers’ social interaction with other kids with the same disabilities provides enormous support. Study author Doug Knapp, associate professor in the Indiana University School of Public Health, said that the experience allows kids to talk about their common disability “like any normal thing,” something they can’t even get with their families.

CMT affects approximately 3 million people worldwide, though many of them are misdiagnosed or not diagnosed at all. The Pennsylvania-based CMTA is leading the fight for treatment and an eventual cure with an extensive research program, as well as community services like Camp Footprint. Raising awareness of CMT is another key part of the CMTA’s mission as early intervention can help prevent some of the deformities that can be part of the disease.

Parents can register online here.

Jonah Berger
+1 303-827-4218
email us here