Friedreich’s Ataxia Research Alliance Announces Ataxia Athlete Winners

Margarida Azevedo, MSc avatar

by Margarida Azevedo, MSc |

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The Friedreich’s Ataxia Research Alliance (FARA) has announced the 2016 winners of the Ataxian Athlete Initiative (AAI), a unique program providing adaptive cycling equipment to people with ataxia who have shown a strong commitment to staying healthy and fit despite their progressive illness.

Since 2009, 33 people have been awarded adaptive equipment from the AAI. In 2016 alone, the AAI funded nine grants for adaptive cycling equipment in seven U.S. states, in Canada, and in Kosovo.

The next application cycle for the AAI grants will begin in the spring of 2017. The administration of these grants is a competitive process; applicants must first search for the most appropriate adaptive cycling equipment to suit their abilities, then describe how the equipment would help them reach their fitness goals and improve their quality of life.

“With no access to adaptive equipment in my country, this grant from the AAI will open up a world of mobility and opportunity for me,” Endrit Januzaj, a grant recipient from Desan, Kosovo, said in a press release.

Another grant recipient from a previous AAI edition, Liam Dougherty, said his mind is at rest when he’s exercising. “When I’m on my trike, I don’t think about atrophy or neurodegeneration, I don’t think about heart complications, or life expectancy. I carry these thoughts and feelings with me, but I am mostly just focused on where I’m going, and the pedal strokes it will take me to get there,” he said.

The 2016 edition of the AAI was supported by Catrike, UVA Sun Systems, Front Burner Brands, the Texas Irish Foundation, and a partnership with Global Genes, called the RARE Patient Impact Grant program.

“The goal of the RARE Patient Impact Grant program is to fund projects that make tangible differences in patients’ lives. The Ataxian Athlete Initiative is a program that is the epitome of true impact and we are proud to support the Friedreich’s Ataxia Research Alliance’s efforts,” said Amanda Knitter, Global Genes’ director of patient advocacy. “We hope to expand the grant program each year so we can support more worthy projects in the rare community.”