Allison Moore remembers how doctors advised her to be careful and avoid physical activity after diagnosing her with Charcot-Marie-Tooth (CMT) disease 30 years ago.
The organization Moore founded as a result of her diagnosis, the Hereditary Neuropathy Foundation (HNF), is now flipping that outdated advice on its head and encouraging people with the most common form of neuropathy — a disease that affects nerve function — to be active and make healthy lifestyle choices.
HNF’s Movement is Medicine summit, which ran Nov. 8–9 in Phoenix, extolled the benefits of proper exercise and nutrition, showcased adaptive workouts, and provided one-on-one consultations with experts on CMT. The inherited disease, which affects about 1 in every 2,500 Americans, causes defects in the peripheral nerves leading to muscle weakness, diminished sensation, and loss of tissue.
About 160 people with CMT attended the event, which took place at the 62,000 square-foot adaptive Ability360 Sports and Fitness Center. Its aim was to help patients at different disease stages to bond over their shared experiences, and be more active. Some were able to walk, while others needed a wheelchair, scooter or leg braces for mobility.
“It was so important for people to be together and not feel judged,” Moore said in a phone interview. “We had something for everybody.”
At the end of the first day, HNF organized a rooftop social and adaptive dance party.
“My biggest takeaway was the camaraderie and the excitement of meeting other people with the same condition and going through the same things that you are,” said Estela Lugo, HNF’s New York-based medical outreach manager. “It was instant friendships and bonds being made.”
Tara Lyn Emerson, a personal trainer with CMT who hosted a spinathon for HNF in September 2019, spoke about the importance of a strong core. She said that growing up, her brother was the only other CMT patient she knew. All the girls around were different from her.
“Physically getting to hug someone else who has the same struggles, who looks like me, walks like me, and has the same difficulties inspired me to want to keep going and to not feel so lonely,” Emerson said in a phone interview.
Brad Floyd, who lives in Austin, Texas, took his daughter Addison Lanciault, 10, and his partner, Karen Lanciault, to the summit. Floyd found that he shared frustrations with many parents regarding the lack of information about the disease.
“It was the first venue that we had where it was a big sigh of relief that we were part of a group that was cohesive,” Floyd said.
For Addison Lanciault, it was a long-awaited opportunity to meet people with similar challenges.
“At first it was really weird,” Lanciault said. Only one other person at her school has CMT. “To bring around a whole group of people like me it’s just a lot different.”
Activities included adaptive rock climbing and rowing, training on the Kayezen Vector, aqua yoga, and tai chi. Workshops focused on bracing, nutrition, and clinical trials.
University of Florida neurologist Lucia Notterpek led the workshop on nutrition, presenting scientific literature showing that a high-fat diet benefits the nervous system. Since those previous studies incorporated high-calorie, high-cholesterol “bad” fats, Notterpek is focusing on “good” fats — like the extra virgin olive oil commonly found in Mediterranean diets.
Besides informing patients about exercise, the summit also aimed to collect data for ongoing research. An onsite clinical trial, “Digital Assessments of Balance and Gait in People with Charcot-Marie-Tooth Disease” — led by Edward Ofori and an Arizona State University team of clinicians — attracted 35 people.
Volunteers and attendees included well-known CMT personalities like Bernadette Scarduzio, the subject of a documentary (called “Bernadette”) available on Amazon Prime Video. Jamal Hill, selected for the 2019 U.S. Paralympics Swimming National Team, met with attendees and held a workshop on learning how to swim.
Emerson said she met an 11-year-old girl whose parents took her to the summit so she could be “inspired to know that she could do things in her life” through the accomplishments of people like Hill.
The next Movement is Medicine summit is planned to run Nov. 13–14.
Sponsors of last year’s event included Pharnext, Acceleron Pharma, Vector Sports by Kayezen, Athena Diagnostics, BioTek reMEDys, ProtoKinetics, Vantage Mobility International (VMI), Lacuna Botanicals, Ortho Rehab Designs: Helios Bracing, Fior & Gentz, Active Hands, Ottobock, Champlain Valley Dispensary, and Bombas.
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