More About Michael and FA
Michael Gehr attended Heritage Hall in Oklahoma City from preschool through his 2018 graduation. His brother, Thomas, graduated in 2020. In middle school, concerns about Michael's coordination and balance led to one diagnosis, but after symptoms worsened, genetic testing confirmed Friedreich's ataxia in January 2016.
Friedreich's ataxia (FA) is a degenerative, genetic, mitochondrial disease, mostly affecting nerves and muscles. Those with FA make only a little of the protein frataxin needed by the mitochondria in cells to produce energy. Since nerves and muscles require lots of energy, they don't work normally. As with Michael, the first symptoms noted are poor coordination and balance, unsteady gait, and scoliosis. Heart disease occurs in nearly all cases, and diabetes in a small fraction. One hundred and fifty thousand (150,000) people in the world have FA, and it’s usually diagnosed between 5 and 18 years of age. FA is usually life-shortening and there is no cure.
Shortly after diagnosis Michael began a clinical trial of omaveloxolone, by Reata Pharmaceuticals. Also that spring Michael taught several of the upper school biology classes about FA, an activity he repeated his junior and senior years at Heritage Hall.
In April 2017 Michael hosted a screening of The Ataxian, featuring Kyle Bryant, which was seen by 270 people and raised $32,000 for the Friedreich's Ataxia Research Alliance (FARA). FARA funds basic scientific research aimed at treating and curing FA. With research funded by FARA and pharmaceutical companies, there are around 13 potential treatments now being studied.
In April 2018 the Gehr family’s first Cure FA Soirée: React With Music exceeded expectations, with 220 attendees, dozens of friends and professionals performing, and $64,000 raised for FARA. Shortly before graduation, Michael received Heritage Hall’s faculty award, and that summer he traveled to Washington, DC as a 2018 Presidential Scholar.
That fall Michael began school at Washington University in St. Louis, where is pursuing a double major in math and economics. In early 2019 Michael began an extension of the omaveloxolone study, and he continued clinical trial visits through the fall of 2023. In October 2019, Reata reported positive, conclusive results for omaveloxolone, leading to approval by the FDA on February 28, 2023 as the first clinical treatment for FA as Skyclarys! The Cure FA Soirée has been held annually since 2018, and in total the six Soirées have sent $1.1 million to FARA!
To raise awareness of FA and raise funds for a cure, Michael and his family will host the seventh Cure FA Soirée: React with Music. Our 2024 goal is $424,000 for FARA! We hope you will join us for a fun musical evening: dinner and dessert with solo and small group musical acts as well as speakers living with FA and those working to find treatments and a cure!
* FARA is a national, public, 501(c)(3) non-profit, tax-exempt organization dedicated to research aimed at treating and curing FA (Tax ID 52-2122720).