Edmond Life & Leisure recently published a story about the Gehr family and the Soirée team’s work on the annual Cure FA Soirée: “Michael Gehr was not yet 16 when he got his crushing diagnosis: Friedreich's ataxia (FA), a degenerative neuromuscular disease with no treatment, that would rob him of the ability to walk and sing, and would likely shorten his life by half. Michael and his family knew they had work to do.”
Read moreMichael Gehr joins fellow FAers in Philly
In early October, Michael Gehr traveled to Philadelphia for RideAtaxia & the Children’s Hospital of Philadelphia (CHOP) Research Symposium, where he participated in filming this video with Biogen & several friends.
Read moreFAer Sydni Dupre Never Slows Down!
Sydni Dupre is a young, vibrant entrepreneur who happens to have Friedriech’s ataxia (FA).
Read moreFARA Ambassador Madelyn Frederick, in her own words
I am 24 years old and a Texas native. At 13 years old, I was diagnosed with Friedreich’s Ataxia (FA). I found out that I had hit the genetic jackpot.
Read moreListen to Michael Gehr share his story during a podcast this past fall
Michael talked with PTC Therapeutics’ Emily Hintze for their podcast “Insightful Moments My VIBE” at the FARA FA Symposium at CHOP this fall. He shares his diagnosis story, insights about his college experience and info about the Cure FA Soirée.
Eric and Liz are proud of him for pursuing a college degree, living independently, and attending FARA events despite the challenges presented by FA. #CureFA
MEET FA'er Emily Rogez
Emily Rogez with mom, Tracy, brother Trey, and his daughters, Paisley and Hannah
Twenty-seven-year-old Emily has lived on her family homestead with her mother, Tracy, and older brother’s family for about a year.
Read moreMEET FA'er Christin Haun
I am Christin Haun from Broken Arrow, Oklahoma, part of the Tulsa metro area. I was diagnosed in 1985, at 14 years old, as having Friedreich's ataxia.
Read moreMEET OUR FA FAMILIES: Taber Elam and His Family
Eighth grader Taber Elam has had quite a journey since 5th grade…
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