CMT Awareness Month
- When
- September 2026
- Where
- Anywhere
September is CMT Awareness Month, and this year the theme is #ThisIsCMT. The point of it is to show the full spread of what living with Charcot-Marie-Tooth actually looks like, because most people picture one thing, and CMT is never one thing.
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. There is no right CMT story, and that is exactly what HNF wants people to see.
Post it with #ThisIsCMT, add the donation link, and tag HNF so they can share it on.
For a disease that affects roughly one in 2,500 people and that most of the public has never heard named, a month of deliberate noise does real work. It is what gets a family to a diagnosis years earlier than they would have reached one, and what gets a neurologist to think of CMT rather than the third thing on their list.
You do not need to organise anything or raise a dollar to take part. Below are seven ways in, and the first one takes about ten seconds.
Seven ways to make this September count
None of these take long, and all of them count. Start anywhere.
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Add the #ThisIsCMT frame
Drop the campaign frame onto your Facebook or Instagram profile photo. It takes about ten seconds and keeps working every time somebody sees your picture this month.
Get the frame -
Share your story
Post a photo or short video of what CMT looks like for you today, the visible parts and the invisible ones. Tag it #ThisIsCMT so HNF can share it on. There is no right CMT story.
See other stories -
Donate in honor or memory
Give once or monthly, in your own name or in memory of someone. It funds the registry, the biobank and the trial readiness work rather than sitting in an endowment.
Donate -
Start a Facebook fundraiser
A few clicks sets one up and your friends can give straight from the post. It raises money and explains CMT to people who have never heard of it, in the same breath.
Start a fundraiser -
Join GRIN
GRIN is HNF’s global patient registry. Signing up takes minutes and costs nothing, and it puts your data where the researchers designing CMT trials can actually use it.
Join the registry -
Donate a gown
Send a gently used gown or formal dress and half the sale price funds CMT research. The goal is 1,000 gowns and $50,000, and shipping is a single flat rate box.
How it works -
Come to an event
Bingo nights, clay shoots, marathons and biobank collection days. Some raise money, some collect the data the science runs on, and all of them are easier to bring a friend to than you think.
See what is on