NeuroVoices: Lily Sander on Advocacy, Community, and Raising Awareness for Charcot-Marie-Tooth Disease

Lily Sander

Charcot-Marie-Tooth disease (CMT) is the most common inherited peripheral neuropathy, affecting about 1 in 2,500 people globally. It includes a group of genetic disorders that damage peripheral nerves, leading to muscle weakness and sensory loss, mainly in the hands and feet. Caused by gene mutations that disrupt nerve function, CMT progressively impacts mobility and quality of life. Early diagnosis and management are crucial for supporting patients through this lifelong condition.

While there is no cure for CMT, treatments focus on symptom management and improving daily life. Physical and occupational therapy help maintain muscle strength, while orthotic devices support mobility. Pain management and, in some cases, surgery address complications like foot deformities. Research into potential therapies, including gene and drug-based approaches, is ongoing, offering hope for more targeted treatments in the future.

Lily Sander, a patient advocate for CMT, was named as the 2025 Muscular Dystrophy Association (MDA) National Ambassador ahead of the organization’s annual meeting. As part of a new iteration of NeuroVoices, Sander shared her inspiring journey as a patient advocate and what this award means to her as someone living with CMT. She delved into the importance of building community, raising awareness among clinicians, and advocating for earlier diagnosis and better support for individuals with neuromuscular conditions. Above all, she offered unique insights into the CMT community, the value of patient-focused organizations, and the exciting research that gives hope for the future.

NeurologyLive: What does it mean for you to be named an MDA Ambassador?

Lily Sander: Being a national ambassador is truly a dream come true. I started my journey with MDA. I was diagnosed by a Care Center Director, and I have just grown up with the MDA. I attended summer camp, and that's where my relationship with disability changed. I was just enveloped in the community. So it's such a full-circle moment to now be representing the organization that has truly affected my life so much.

Are there lesser-known aspects of CMT that the clinical and public communities aren’t as aware of?

It is a peripheral neuropathy. It stands for Charcot-Marie-Tooth, named after the three scientists who discovered it. It affects the muscles and nerves below the elbow and below the knee, so there is gradual degeneration. It is a progressive disease. It is rare, but it's not super rare. Many of your listeners and viewers may know someone with CMT, whether they know it or not. It's about one in 2,500 people. So, it is the most common inherited peripheral neuropathy. It’s more common than we think. That’s what physicians need to know. It is incredibly important that they are educated about the disease because, often, it can take years to get diagnosed, and I think that is way too long.

What is the feel of the CMT community?

The CMT community is incredibly connected. We often grow up together and find support, help, and just love within our community. There are many organizations that people can turn to, similar to the MDA. My emphasis is really on helping people find their people. Having a community and finding people who can support you through this journey is incredibly important. There are plenty of online groups and support groups. Technology has truly connected us like never before. So, it’s just important to find your people, whoever they may be and wherever they may be.

Do you have any “call to action” for the clinical community?

I would emphasize the importance of being informed about CMT, not only that but also how to connect your patients to organizations that support them. Often, people are diagnosed and then told, “Okay, go home and live with the disease,” because there are no treatments or cures. That makes it incredibly important to connect patients with organizations like the MDA, who can support them medically but also socially.

From your perspective, what is the best part of the MDA conference?

It’s just so fun to talk to clinicians, physicians, and researchers about the science that is coming out. It’s truly incredible to have this many people with so much knowledge and expertise under one roof. Being able to pick their brains about different diseases, diagnoses, and what they’re doing in the lab and with patients is truly incredible.

And that’s where community and collaboration come in. Even though a lot of the doctors and researchers don’t work with the same disease, there’s a lot of overlap and collaboration that can be done, which is something the MDA really emphasizes—making those connections.

What is the coolest piece of emerging research that catches your eye? Anything that stands out to you?

I’m very impressed by the animal studies that are being done. I follow CMT specifically, so just seeing how different drugs are being tested and that kind of research coming out is amazing. Also, different technologies for tracking progression and getting involved with patients to see how they’re doing over time are very interesting.

What are the best ways we can continue to support patients with neuromuscular disorders?

Education is incredibly important, as is collaboration across studies, and again, supporting organizations like the MDA, who support patients in more than one way. I’m a big advocate for the MDA, obviously, but I would say that supporting this kind of work is vital—not just for patients but also for professionals.

Transcript edited for clarity. Click here for more MDA 2025 coverage.