Living with CMT
You are not alone, and you are not imagining it.
Whatever brought you here, a new diagnosis, a question no one has answered, or years of searching for better resources, this is a calm place to start. Find your subtype, find specialists who know the disease, and find a community that has been working toward a cure since 2001.
If you just got the diagnosis, or your child did, take a breath. You do not have to understand all of this today. Charcot-Marie-Tooth disease (CMT) is the most common inherited neurological disorder that few people have ever heard of. There are more than 100 subtypes, and they do not all look the same, so what you read about one person may not match your own experience. That is normal.
Here is what changes when you know your subtype. Care decisions get clearer. Clinical trials can open up. Family questions get real answers. And your neurologist gets a partner instead of a puzzle. That is why most people start with CMT Genie, HNF's patient-initiated genetic testing program. Everything else in this section is here to meet you wherever you are.
By the numbers
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A documentary worth sharing
Bernadette Scarduzio, known to many as Bern, is one of the most recognizable faces of CMT and a longtime national spokesperson for HNF. She lives with CMT type 1A, the form that ran through her family for generations, and she let cameras into her life for four years so the world could finally see what this disease really looks like.
The result, the documentary Bernadette, is a feature-length film about Charcot-Marie-Tooth disease, filmed over four years and funded by HNF. It follows her journey from patient to advocate and puts a human face on a condition most people, including many doctors, have never heard of. It does what a statistic cannot: it makes CMT impossible to look away from.
If you have ever struggled to explain CMT to family, a friend, or a new clinician, this is often the fastest way to help them understand. Watch it, then pass it on. Every viewing moves CMT a little closer to being a household word, which is exactly what Bern set out to do.
One more thing
If you take nothing else from this page, take this: a CMT diagnosis can feel like the end of the life you had planned. It is not. It is the beginning of understanding something your body has been trying to tell you, and from here, things get less scary, not more. People with CMT build careers, raise families, run organizations like this one. Life looks different. It is still very much life.
There is no deadline on any of this. When you are ready, tonight or months from now, we are here. And if you would rather just talk to a person first, that is what we are here for: someone on our team who knows this disease, many of us because we live with it too. Reach out for a conversation.