From Diagnosis to Determination 

At 15, Michael Gehr received a life-changing diagnosis: Friedreich’s Ataxia (FA). The rare, degenerative genetic disease affects coordination, balance, and heart health. But instead of retreating from the world, Michael stepped into the spotlight—with resilience, wisdom, and a powerful desire to make a difference. 

“Growing up, I was never super athletic. It was just seen as clumsiness I never grew out of,” Michael said. Initially diagnosed with a milder condition, Charcot-Marie-Tooth disease, Michael’s symptoms worsened over time, leading to a genetic test that confirmed FA in 2016. “In a strange way, having that middle diagnosis helped. It was a gentler transition from a ‘normal’ life to one affected by FA,” he reflected. “It gave me time to adjust.” 

That attitude—practical, introspective, and relentlessly positive—has become a defining part of who Michael is. Rather than focus on limitations, he’s poured his energy into action. 

Just a year after his diagnosis, he helped organize a screening of The Ataxian, a documentary about a cyclist with FA. It raised $32,000 and sparked a new idea: a music-centered fundraiser that would grow into one of the largest FA-related events in the country. 

In 2018, Michael and his family launched the Cure FA Soirée, blending their shared love of music with their commitment to finding a cure. “We were raised singing and harmonizing— it made sense to use what we loved to do something good,” Michael said. Michael’s younger brother, Thomas, performs several numbers each year, along with performers from Michael and Thomas’ school. 

The first Soirée raised $64,000. Last year, the total was $480,000. Over seven years, the event has contributed more than $1.5 million to the Friedreich’s Ataxia Research Alliance (FARA), with hopes to reach $2 million this June. 

While his parents, Eric and Liz, focus on organizing the event itself, Michael is the heart of the weekend. He plans activities for visiting families, coordinates community events, and delivers an annual speech that’s become a stand-out element of the Soirée. “He’s found his voice in this,” said Liz. “Public speaking wasn’t something he might’ve explored otherwise, but now he shines.” 

Beyond fundraising, Michael serves as a FARA ambassador, helping newly diagnosed individuals connect, find support, and access resources. “It can feel isolating at first,” he said. “But the FA community is incredibly strong—much stronger than you’d expect for a disease like this. Knowing you’re not alone changes everything.” 

Michael’s strength isn’t just in what he’s overcome—it’s in how he’s chosen to meet each challenge: with honesty, compassion, and a quiet, inspiring drive to bring hope to others. 

The 2025 Cure FA Soirée takes place June 7 at the Omni Hotel in Oklahoma City and everyone is invited to attend – whether virtually or in person. To donate, attend, or stream the event, visit curefasoiree.org.