In 1998, Raychel and Ron Bartek, along with other parents and scientists, co-founded the Friedreich’s Ataxia Research Alliance (FARA) in honor of their son Keith, who, at the age of 24, succumbed to Friedreich’s ataxia.
FARA is an organization dedicated to the pursuit of scientific research leading to treatments and a cure for the disease. Friedreich’s ataxia (FRDA) is a debilitating, life-shortening, degenerative neuromuscular disorder that occurs in about 1 in 50,000 people in the United States, and nearly twice that number in Europe and there is no treatment.
“In the last 20 years, FARA has witnessed a tremendous increase in the understanding of Friedreich’s ataxia and the number of companies working on treatments for the disease.”- Jennifer Farmer, Executive Director, FARA
The disease is caused by mutations in the gene that is responsible for the production of an essential mitochondrial protein, frataxin. Children and young adults progressively lose the ability to walk and speak, and their hearts become very thick and weak, and can eventually fail.
“In the last 20 years, FARA has witnessed a tremendous increase in the understanding of Friedreich’s ataxia and the number of companies working on treatments for the disease,” says Jennifer Farmer, Executive Director, FARA. “We are excited to be contributing to this effort, with FARA funded natural history and biomarker studies, as well as facilitating patient feedback and guidance. This not only advances knowledge of the disease, but can help in the determination of the most appropriate clinical trial designs.”