Patient advocates are getting real for this year’s CMT Awareness Month
#ThisIsCMT campaign aims to combat misconceptions about genetic disease
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September is CMT Awareness Month, and advocacy organizations are running campaigns to highlight the diverse lived experiences of people with Charcot-Marie-Tooth disease (CMT).
According to the Hereditary Neuropathy Foundation (HNF) — whose motto is “CureCMT” — the theme for this year’s awareness month is #ThisIsCMT. The goal, the nonprofit notes, is to encourage people living with the inherited disease to share what their lives are actually like and fight misconceptions about CMT. Participants are encouraged to post stories on social media, and the HNF offers a #ThisIsCMT frame for profile pictures.
“Share a photo or a short video of what CMT looks like for you today. The visible parts and the invisible ones. Adaptations, wins, frustrations, mobility aids, accommodations, funny moments, ordinary Tuesdays,” the HNF says on its website. “There is no right CMT story, and that is exactly what HNF wants people to see.”
The condition affects approximately 1 of every 2,500 people, but is little known outside the community. The HNF is trying to increase awareness with “a month of deliberate noise,” it states on its webpage.
Throughout September, the HNF is also raising funds through monetary donations and its dress donation program. People with CMT are also encouraged to sign up for GRIN — fully, the Global Registry for Inherited Neuropathies — a worldwide effort that the HNF is running to collect data that will accelerate disease research.
CMT refers to a group of genetic disorders that cause problems with the peripheral nervous system — the nerves that run throughout the body outside of the brain and spinal cord. This leads to symptoms such as movement problems, hearing loss, fatigue, and sensory issues.
#ItTakesNerve campaign spotlighting patients’ courage
Every September, CMT Awareness Month offers a chance for advocates and different groups to come together as a community and educate the public about the condition. For its campaign this year, the Charcot-Marie-Tooth Association (CMTA) is punning on the neurological underpinnings of the disease with the slogan #ItTakesNerve.
The CMTA is calling on community members to share stories of when they had to show nerve in the metaphorical sense, demonstrating courage in the face of daunting obstacles. Stories can be shared online and via Instagram with the hashtag #ItTakesNerve. The stories will then be compiled on the CMTA’s website, in a portal dubbed The Nerve Center.
“Every person with CMT has a story about a time they had to dig deep and do the thing anyway. Getting on the plane. Speaking up at the doctor’s office. Walking down the aisle. Trying out for the team. Big or small, we want to hear it all,” the CMTA said on its website.
Later this month, the CMT Research Foundation is hosting the 2026 Global CMT Research Convention, which brings the community together to discuss the latest advances in CMT research. The event runs from Sept. 24 to 26 in Cambridge, Massachusetts; the first two days are geared toward researchers, clinicians, and investors, while the last day is tailored for patients — though all are welcome each day.
#MDAstrong drive asks what ‘strength’ means
September is also Muscular Dystrophy Awareness Month, which aims to raise educate the public about muscular dystrophies, a group of genetic disorders marked by muscle weakness and wasting. Muscular dystrophies can cause many of the same symptoms seen in CMT, and advocacy for these two conditions overlaps.
The Muscular Dystrophy Association (MDA) — which advocates for a range of neuromuscular diseases, including CMT — is marking this awareness month with a campaign called #MDAstrong, which invites everyone in the neuromuscular disease community to share what strength means to them.
“The Muscular Dystrophy Association reminds me — and other people living with CMT — that we belong,” Grace, an MDA Ambassador from South Carolina who lives with CMT, said in a press release from that organization. “Our difference is our strength.”
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