A Five-Year Journey to Diagnosis
Sam Dupre’s journey with Friedreich’s ataxia (FA) began long before he knew what it was. At just five years old, during a T-ball game, his parents noticed something wasn’t quite right. He seemed unsteady, struggling with balance in ways other kids his age did not. What followed was a long and frustrating search for answers. Doctor after doctor offered possibilities but no clear diagnosis. For five years, Sam’s family continued to push for answers, determined to understand what was happening. Finally, at age ten, Sam received the diagnosis: Friedreich’s ataxia, a rare neuromuscular disease that affects balance, coordination, and mobility. Today, Sam is in his early thirties. He lives with his father and receives support from a caregiver. Life in a wheelchair brings its own daily challenges, but Sam works hard to maintain his independence and stay engaged with the world around him. One of the ways he does that is through writing.
Turning Challenges Into Stories
For Sam, writing has become both a passion and a lifeline. Over the last few years, he has written several science fiction and fantasy books, along with pieces reflecting on his experience living with FA. Some of his work is now published on Amazon, where he shares both imaginative stories and personal reflections on resilience and hope. In his own words, Sam describes the moment his life changed and the determination that followed:
“I was only ten years old when I was diagnosed with this life-altering disease. I remember feeling a mix of emotions. I was scared, confused, and angry. Why me? Why did I have to be the one with this rare disease? I didn’t understand why this was happening to me. I was just a kid who wanted to play and have fun like everyone else. But as I grew older, I realized that I couldn’t let this disease define me. I couldn’t let it take away my dreams and aspirations. I decided to fight back. I decided to live my life to the fullest, despite my condition. Today, I am in my late twenties. I am still living with Friedrich’s ataxia (F A), but I am not letting it stop me from living my life. I am still fighting, still pushing forward. I am still hopeful that one day, there will be a cure for F A. I am not just a person with Friedrich’s Ataxia. I am a fighter, a survivor, a dreamer. I am a person who refuses to be defined by a disease. I am a person who chooses to live life to the fullest, despite the challenges. I am a person who chooses to hope, to dream, to fight. And I will continue to do so, no matter what. This is my story.”
Tattoo of Sam Dupre’s cover art of one of his books
Through writing, Sam has found a way to process his experiences, share his story, and connect with others who may be facing similar challenges.
Sydni and Sam in their teens
Staying Connected to the FA Community
Community plays a powerful role in Sam’s life. He regularly participates in FA Hangouts, monthly virtual gatherings where adults living with FA connect, share experiences, and support one another. These conversations help strengthen the bonds within the FA community and remind participants that they are not facing the disease alone. Sam also joins forces with his younger sister, Sydni Gibson-Dupre, who is also living with FA. Together, they continue to advocate and raise funds for the Friedreich’s Ataxia Research Alliance (FARA). They will participate in the upcoming RideATAXIA Hometown Lake Charles event on April 11, 2026, helping raise awareness and critical research funding. Consider donating to their team or sponsor/attend/donate to the 2026 Cure FA Soirée where every dollar raised (up to $300,000) will be matched by anonymous donors. Every event, conversation, and shared story brings the community one step closer to better treatments—and ultimately a cure.
Lessons Along the Way
Living with FA has taught Sam many things, but one lesson stands out above all others: the importance of accepting help and leaning on others when needed. As he reflects: “Living with FA has taught me many valuable lessons, but the most important one is that it’s okay to accept help from others. I’ve learned to appreciate the support and assistance people offer. Even though I’m excited about the treatment options becoming available, accessing the medication I need hasn’t always been easy. But I remain hopeful and determined to overcome that obstacle.” Despite the uncertainty that comes with a progressive disease, Sam continues to look forward with determination and optimism.
Looking Ahead
Sam’s story is one of resilience, creativity, and hope. Through writing, community, and advocacy, he continues to carve his own path forward while helping raise awareness for Friedreich’s ataxia. For Sam, the journey continues—and so does the hope for a cure.
More about Sam can be found on his personal website and TikTok account.