Key Characters
Meet the Characters
Kyle Bryant
Kyle is the author of Shifting into High Gear: One Man’s Grave Diagnosis and the Epic Bike Ride That Taught Him What Matters, the subject of the 2015 documentary The Ataxian, and the co-host of Two Disabled Dudes, a podcast about resilience and rare disease. Somehow, whatever Kyle sets out to accomplish, he gets it done. So… sure, he says. Let’s plan a bike ride up the highest paved road in the world and make a film about it.
Sean Baumstark
Sean lives with Friedreich’s Ataxia and embodies the mantra “get stuff done.” Sean ran his first 10k three weeks after being diagnosed in 2007. He is the founder of Determinence, a nonprofit helping disabled individuals experience the beauty and power of physical achievement. He is a subject in the The Ataxian film and a co-host of the Two Disabled Dudes podcast. He lives and works in Sacramento, CA.
Colin Meyer, MD.
While Chief Medical Officer and Chief Research and Development Officer at Reata Pharmaceuticals, he led the development of the first and only approved treatment for Friedreich’s Ataxia. He strives to educate rare disease communities about how people, doctors and scientists can think about disease and collaborate to move towards treatments and a cure.
Ron Bartek
Ron is the visionary founder of FARA. When his son, Keith, was diagnosed in 1998, Ron and Raychel Bartek decided to change the future course of Friedreich’s Ataxia. Together, with other parents, they created the Friedreich’s Ataxia Research Alliance and proved the mantra that, “there is very little we can’t do together.”
Jennifer Farmer
Jennifer is the Chief Executive Officer of the Friedreich’s Ataxia Research Alliance. With a Master’s degree in genetic counseling, Jen developed a special interest in neurogenetic conditions and joined FARA full time in 2006. As the CEO of the organization, she has led the development of a natural history study, a robust drug development pipeline, and the collaboration between the the FA community and the key stakeholders involved in the first treatment approval for FA.
Jack DeWitt and Ruth Acton
Jack and Ruth are unsung stars of this story. Jack is living with FA, and he had a cameo in The Ataxian film when he was 8 years old. His mom, Ruth, has been dedicated to fighting FA since Jack’s diagnosis. Not only is Ruth FARA’s Director of Finance and Human Resources, she was the catalyst behind the first treatment for FA. She had read a newly published study that linked Nrf2 activation with slowed progression in FA, and she introduced a company working to develop a Nrf2 activator to FARA.
Janet Woodcock, MD
Janet is the former acting commissioner of the Food and Drug Administration. In her role leading the regulatory agency, she oversaw initiatives to improve the timeliness and transparency of FDA procedures and the safety, quality and effectiveness of approved drugs. Importantly for this story, she encouraged the agency to exercise the flexibility they are legally afforded in the evaluation of potential treatments for rare diseases.