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.

Nine years later, the annual event founded by the Gehr family, now supported by an incredible team, has raised $1.5 million for FA research, and one treatment to slow the disease is available.

This year’s Cure FA Soirée will be Saturday evening, June 7, at the Omni Hotel in Oklahoma City, and feature performances by talented musicians along with dinner for hundreds of guests from across the country. Earlier that day, FA families, researchers, and pharmaceutical companies will gather to discuss the latest research and potential treatments.
When diagnosed in 2016, Michael took action: he got evaluated for a clinical trial and started when he turned 16. The next year, fundraising for the Friedreich's Ataxia Research Alliance (FARA), he hosted a screening of the film, "The Ataxian", starring cyclist Kyle Bryant, a young adult with FA who’s now a friend. In 2018 Michael and his family started the Cure FA Soirée , and in seven years it’s sent $1.5 million to FARA.

The Gehr family organized the first two Soirées, with performances by friends of Michael and his brother, Thomas, as well as by local professional singers and musicians. For 2020’s virtual Soirée, performers recorded parts and wove them into complex performances. With viewers in 25 states and five countries it raised $100,000 for FARA. Then a team of volunteers assembled, with families and friends touched by FA, and subsequent Soirées grew. Thanks to the team, 2024 was an incredible success: 300 people attended, including 32 guests with FA from 14 states, Canada, and The Czech Republic, there were livestream viewers from seven countries, and the Soirée raised $483,000 for FARA.

Join the fun at this year’s Cure FA Soirée on Saturday, 7 June! Log onto curefasoiree.org - the Cure FA Soirée to know more.”