Camp Footprint Returns as Virtual Adventure for Youth With CMT

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by Steve Bryson, PhD |

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Camp Footprint

(Photo by Young Lee)

Children and teenagers with Charcot-Marie-Tooth (CMT) disease have until May 15 to sign up for this year’s edition of Camp Footprint, which will be held virtually from Aug. 2 to 6. 

First launched by the Charcot-Marie-Tooth Association (CMTA) in 2016, the camp is for people ages 10 to 18 with the inherited disease.

Youth with CMT face physical limitations daily, with difficulties in balance and walking. They are often excluded from school physical education programs, after-school sports, and neighborhood games, which can affect their self-esteem. 

Camp Footprint’s mission is to provide a safe sleep-away camp environment, where people with CMT can interact and share their lived experiences of physical and emotional challenges.

“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,” Erin Black, a 19-year-old former camper and now a counselor, said in a press release. “For one week, CMT isn’t an ugly, painful neurological disease — it’s a superpower.”

The first four years of Camp Footprint — motto “One Step at a Time” — were held just outside Pittsburgh, with children and teens engaging in a series of daily activities such as music, swimming, horseback riding, and campfires. 

Due to COVID-19 pandemic restrictions, the usual camp experienced was replaced with five days of online activities via Zoom  in 2020, and will be again this year.

The association arranged for Camp-in-a-Box last year, which contained all that is needed for a typical camp experience: crafts, a powder battle, singing and drumming, pizza night, and a dance. A traditional campfire, that included flickering lanterns and S’more Pop-Tarts, was available as well.

Participants in the upcoming event, to be run from 9 a.m. to 10 p.m. (with a break between 5 p.m. and 7 p.m.), will search for “Queen Corona,” who stole the keys to Camp Footprint and locked them out. Kids will look for clues to the keys’ location throughout the week, so they can return to the sleep-away camp that’s anticipated for next year.

The study, “Examining Perceptions of Social Acceptance and Quality of Life of Pediatric Campers with Physical Disabilities,” reported that camps for children and teens with disabilities like CMT provide social support and self-affirming opportunities, through interactions with others with the same challenges. Rewards include a lesser sense of social isolation, greater connectedness, and a sense of community.

Doug Knapp, PhD, a study author and professor at Indiana University School of Public Health, said the camp experience allows young people to talk openly about their disabilities “like any normal thing,” and in ways not usually provided by their families. 

Parents can register their children and teens here. Campers are accepted on a first-come, first-served basis.