Over 200 people participated in the Walk 4 CMT, an annual fundraiser to raise awareness about Charcot-Marie-Tooth (CMT) disease. This year’s walk, held in Bridgewater on September 21, brought the community together to show support and raise funds for research. Sponsored by the Charcot-Marie-Tooth Association (CMTA), a nonprofit organization dedicated to helping people with CMT, the walk brings hope to all affected by this disease.
For Nicole Hudson, who was diagnosed with CMT in 1997 at the age of 15, the Walk 4 CMT is a special part of her journey. “I am so grateful to my family and friends for standing beside me and for all of our amazing teams for pulling out all the stops this year,” she stated.
CMT is one of a group of disorders that cause damage to the peripheral nerves—the nerves that transmit information and signals from the brain and spinal cord to and from the rest of the body, as well as sensory information such as touch, back to the spinal cord and brain, according to the National Institute of Neurological Disorders and Stroke. CMT also can directly affect the nerves that control the muscles, mostly in the arms and legs.
Named after the three doctors who first described it in 1886: Charcot, Marie, and Tooth, CMT affects one in every 2,500 people—a rare disease subdivided into multiple subtypes, each with a lower prevalence. Due to the degradation of their nerves, people with CMT suffer lifelong progressive muscle weakness and atrophy of the arms and legs, and can affect other parts of the body. This leads to problems with balance, walking, hand use, and more. There currently is no treatment or cure for this debilitating disease, according to CMTA.
Because there is no treatment for CMT, staying active is critical. For Hudson, that includes walking, using an elliptical machine and Pilates. Twice per week, she participates in Pilates classes to strengthen her core, shoulders and back, but the classes do more than that.
“When I do things I thought I couldn’t do, it helps me mentally,” Hudson said. “CMT is not beating me.”
Hudson attends these exercise classes at Club Pilates in Montgomery, and it is there that she met the owners, Karen and Todd Spidare.
“When Nicole joined our Montgomery studio at the end of 2022 and shared about her CMT diagnosis and how Club Pilates has made a difference in her life, we were thrilled,” explained Todd Spidare.
Nicole educated the Spidares about CMT and the mission of the CMTA. That was all they needed to get involved.
“Two of the main reasons Karen and I got into this business was to provide a place that makes a difference in people’s lives through movement, and to be involved in our community. These are pillars of our mission,” he said.
Hudson stated that she is “beyond grateful” that Club Pilates not only supports her physical journey with CMT, but that they have also stepped up to sponsor the annual NJ Walk 4 CMT.”
Hudson, who at a young age was inspired to give back, is a development specialist at CMTA. She has also been the Walk 4 CMT ambassador since 2022.
“Working with the CMTA makes me feel like I am a part of the solution,” she said. “I have been a professional fundraiser for over 20 years, so to bring my experience and skills to the CMTA these past two years is truly a full-circle moment for me.”
Kara Kornberger and her family also participated in this year’s Walk 4 CMT, their third time taking part in this event.
“My son was diagnosed with CMT when he was three years old,” she said. “It was frustrating for me to watch the progression of the disease and not be able to do anything about it.”
So, Kornberger went on a path to raise money and awareness for CMT.
“Our team has grown to 114 members this year and raised just over $16,000,” she said. “The walk has given us hope that one day Caden will be able to benefit from a treatment or better yet, a cure.” The walk, she stated, gives Caden a positive focus.
Hudson believes that CMT patients and their caring support systems will push the mission for a cure forward.
“Seeing that there is a community out there and being able to talk with people who understand what it is like to have CMT, and the challenges and fears that come with it, has been amazing,” she said.
The CMTA is a community-focused, community-driven 501(c)(3) nonprofit organization with a mission to support the development of new treatments for CMT, to improve the quality of life for people with CMT, and, ultimately, to find a cure. For more information visit www.cmtausa.org.
