Guest Voice: Camp Footprint helped me find my CMT ‘coffee filter,’ community
Sharing a disability has a way of creating instant bonds
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I was diagnosed with Charcot-Marie-Tooth disease (CMT) at 12 years old. Although CMT runs in my family, this was still a hard pill to swallow. To put it bluntly, I was so completely uninterested in having a disability that I decided to just ignore it.
For a few years, I mostly treated my CMT like an annoying little brother. If I absolutely had to acknowledge it, I would, like when I was asked to be in a group that wanted to race. But once in a blue moon, I would Google cures or current clinical trials. I think my rationale was that if I could just get rid of this thing, I would never have to face it.
In one of my midnight lurking sessions, I stumbled upon Camp Footprint, a weeklong sleepaway camp for children with CMT funded by the Charcot-Marie-Tooth Association (CMTA). It was 2020, in the middle of the COVID-19 pandemic, so camp was virtual that year. That appealed to me; it felt like less of a commitment.
That first year of camp, I rarely participated, joining only one or two Zoom calls a day. I would complain to my mom about how positive these people were about their CMT. At that time, I couldn’t see how anyone could view their CMT positively.
Making the leap
After following a couple of the girls in my virtual cabin on Instagram, I didn’t think about camp for years and continued to ignore my CMT. In 2024, one of those girls posted that Camp Footprint was looking for counselors. Something inside me just yelled, “Sign up!” I still cannot explain what compelled me to do it; maybe it was because my symptoms had progressed, or maybe it was a higher power, but I filled out an application.
As the first day of camp neared, I grew increasingly nervous. I had never met any campers or staff in person, and to add to it, I had broken my foot and was in a cast and using a knee scooter.
From left, Aaron Dononberg, Emma Prohl, and Paige Adair complete their Camp Footprint staff training for the summer of 2026 in Otis, Oregon. (Courtesy of Emma Prohl)
Despite all of that, everyone immediately felt like family. I was having genuine, deep conversations with people I had just met. There is something about sharing a disability that creates an instant bond between people. Those initial conversations have grown into some of my closest friendships, and I could not be happier that I made the leap and went to camp.
Jonah Berger, the Camp Footprint director, said something on one of the first days that I carry with me everywhere I go. “People who can’t handle your CMT are filtered out [as though CMT were a coffee filter], and those that have the right heart can pass through!” After years of trying and failing to hide my CMT, I realized I was missing the whole point. My CMT had been acting as my coffee filter for my whole life; I was just too stubborn to see it.
Here is my best example: Genuine people don’t always reveal themselves through a grand gesture; sometimes it’s someone who recognizes you are walking a little slower and stays by your side while the rest of the group rushes ahead.
Not only had I found my CMT community at camp, but I had also learned to better appreciate my outside community. Now, I will never try to hide my condition again.
Being a part of the CMT community has changed every aspect of my life. Emotionally, I no longer face my symptoms or the mental struggles that come with this disease alone.
Professionally, I will start law school in the fall with the goal of becoming a disability rights attorney. I am also working part time on a grant project that empowers youth with CMT to speak about their disabilities in their communities.
Socially, I just completed my third summer as a Camp Footprint counselor. Every year of camp has made me a better version of myself.
I have been collecting opportunities to connect with the CMT community like they’re Pokémon characters. Last summer, I took a leadership role within the CMTA to help foster a welcoming online community for young adults with CMT. With the help of a few locals, my mom and I have started up a Northwest Indiana CMTA branch. We are also hosting our first benefit walk to raise money for the CMTA on Sept. 5.
Every time I meet a new person with CMT, I feel like I am at a family reunion, meeting a long-lost cousin. I love hearing people’s stories and feeling that ineffable human connection. I want nothing more than to hug my younger self and tell her she is rightfully frustrated, but that her community is waiting for her.
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Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.
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