Our Beginning
What would you do if your son was diagnosed with a rare genetic disease causing progressive neuro-muscular damage? This disease is called Friedreich’s Ataxia, FA for short, and it has no cure . . . yet.
Liz and Eric Gehr did not hesitate when their older son, Michael, was diagnosed with FA. They educated themselves on what is known of this disease, they connected with FA families in the local area and across several states, they met with researchers and medical providers to learn more about possible cures and drug trials, and most importantly, they began educating their friends, family, and the community about FA and how we can all help.
How? Raising funds to benefit the Friedreich’s Ataxia Research Alliance (FARA) is number one. FARA funds basic scientific research aiming to treat and cure FA.
Michael Gehr - Virtual rideATAXIA Chicago, summer 2020
Our Mission
11th year in a row!
(4 out of 4 stars)
Raise awareness and help fund a cure for FA.
Attend the 7th Annual Cure FA Soirée, participate in the silent auction, and make a tax-deductible donation to FARA*.
Participate in awareness events such as rideATAXIA.
* FARA is organized and operated exclusively for charitable purposes in accordance with Section 501(c)(3) of the Internal Revenue Code. For more information, view FARA Financials.
What is FA?
Friedreich’s ataxia (FA) is a debilitating, life-shortening, degenerative neuro-muscular disorder. About one in 50,000 people in the United States have Friedreich's ataxia.
Most individuals have onset of symptoms of FA between the ages of 5 and 18 years. Adult or late onset FA is less common, <25% of diagnosed individuals, and can occur anytime during adulthood. FARA is supporting research that will improve the quality and length of life for those diagnosed with Friedreich's ataxia and will lead to treatments that eliminate its symptoms.
Michael’s Story
Michael was a sophomore at Heritage Hall high school when he was diagnosed with FA. He took part in a clinical trial of Omaveloxolone (Omav) sponsored by Reata Pharmaceuticals in the summer of 2016. He graduated from Heritage Hall high school in 2018.
In early 2019, he began an extension of the Omav trial, and in October of 2019, Reata announced they would be submitting an application to the US Food & Drug Administration to approve Omav as the first available treatment for FA! Omav was approved as Skyclarys by the FDA on Rare Disease Day, February 28, 2023.
Michael will graduate from Washington University in St Louis in May 2024 with a dual major in Mathematics and Economics.
FAmily at The FARA Energy Ball in Tampa, 2021