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…
Read moreThe 2022 Cure FA Soirée & Our OK FA Families Thank You!
The 2022 Soirée raised $247,000+ for the Friedreich's Ataxia Research Alliance!
221 attendees, 25 FA families, 9 states!
5 countries & 16 states online!
Live streamed for the 3rd year
More sponsors than ever before
2022 & earlier Soirées on YouTube
youtube.com/curefasoiree
Sponsor, donate or buy tickets for 2023
give.curefasoiree.org
MEET OUR FAMILIES: Heather Janssen and Her Family
Heather was determined to walk across the stage unassisted to receive her diploma. After having fallen ill during Spring Break, she became more and more unsteady on her feet. Being the independent young woman she is while having had to learn to start asking for help, Heather hatched a plan so she could walk at graduation.
Read moreMEET SILVER SPONSOR AND FA'er Robert Rhodes
My case is atypical and was detected later than normal. As an infant I experienced congestive heart failure and, at the time, it was treated solely as a heart condition. The technology to screen for genetic diseases wasn’t yet available. I developed gait and balance issues in my mid-20s. It wasn't until those were investigated that FA came to light. I was officially diagnosed when I was 31 years old.
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