(Photo Illustration - MetroCreativeConnection - Letter to the Editor)

When I was five years old, I received a diagnosis that would shape my entire life: Charcot-Marie-Tooth disease, or CMT. If you’ve never heard of it, you’re not alone. That’s exactly why I’m sharing my story today.

CMT is the most common inherited neurological disorder, yet so many people have never heard of it. It affects the peripheral nerves in my feet, legs, hands, and arms, causing progressive muscle weakness. For me, this means that things many people take for granted — running, jumping, climbing hills — are significant challenges. Simple activities that others do without thinking require extra effort and determination from me.

Living with CMT hasn’t been easy, but it has taught me resilience and given me a purpose.

I’m proud to serve as an ambassador for the CMT Research Foundation, an organization dedicated to finding treatments and a cure for this condition. Through this role, I’ve been able to advocate for others living with CMT and help raise awareness about a disease that affects so many yet remains largely unknown.

Being an advocate has been one of the most rewarding experiences of my life. I’ve learned that by sharing our stories, we can make a real difference. Every person who learns about CMT is another person who might recognize symptoms, support research, or simply understand what someone in their community is going through.

I’m deeply grateful to the CMT Research Foundation for their tireless work and for giving me the opportunity to be part of something bigger than myself. Their dedication to research and patient support has been invaluable, not just to me, but to thousands of families affected by this condition.

My hope in sharing this story is simple: wanting our community to know about Charcot-Marie-Tooth disease. I want people to understand that while CMT presents challenges, it doesn’t define who we are. We are mothers, fathers, students, workers, and advocates — people living full lives while managing a condition most have never heard of.

If my story helps just one person feel less alone, or inspires someone to learn more about CMT, then it will have been worth telling.

To learn more about Charcot-Marie-Tooth disease or to support research efforts, please visit the CMT Research Foundation.

Alyccia Barker

Parkersburg