More than 200 people joined patients with Friedreich ataxia (FA) in an inaugural walk and bike ride around Victoria’s Mornington Peninsula yesterday, raising $60,000 towards research into the debilitating and fatal neuromuscular disease.
Australian FA patients, their friends and families joined champion US athletes and FA patients Sean Baumstark and Kyle Bryant, who initiated RideATAXIA in the US in 2007.
Bryant, who with Baumstark is the subject of award-winning documentary The Ataxian, was diagnosed with FA at age 17. After discovering he could travel long distances on a recumbent tricycle and driven by a passion to do more, Bryant completed the most gruelling bicycle race in the world – the 4,000km Race Across America – raising international awareness and more than $6 million towards gene-therapy research. Baumstark was by his side.
Melbourne’s Carrie Beetham, 41, has been living with FA for more than 20 years and yesterday completed the two-kilometre walking course in her wheelchair. She said Kyle and Sean inspired all patients to participate.
“It is fantastic to get out there and see everyone joining in, whether they are able to walk or ride, are seasoned cyclists or doing the course in a wheelchair,” Carrie said. “Kyle and Sean inspire us all.”
RideATAXIA helps to raise awareness as well as to raise money into gene-therapy research, which might eventually cure Friedreich ataxia. Commonly diagnosed in teens, the rare and debilitating disease affects a patient’s ability to walk, talk and use fine motor skills. Symptoms include a lack of coordination, slurred speech, difficulty eating and swallowing, eye movement abnormalities, tremors and, ultimately, heart problems.
The event was run by not-for-profit organisation fara, which has raised more than $3 million towards ground-breaking research and hopes to fund clinical trials in Australia in the next couple of years.
“Friedreich ataxia affects about one in 30,000 people in Australia and New Zealand and one in 100 are carriers, yet many of us have never heard of it,” fara Executive Director Kadi Morrison said. “It is a debilitating, degenerative and fatal disease with no treatment and no cure.”
RideATAXIA was launched by the Honourable Greg Hunt, Member for Flinders and Minister for Health.