SOURCE: The Friedreich's Ataxia Research Alliance

FiComm Partners

June 30, 2016 15:25 ET

The Friedreich's Ataxia Research Alliance (FARA) Announces Recipients of the 2016 Ataxian Athlete Initiative (AAI)

DOWNINGTON, PA--(Marketwired - June 30, 2016) - The Friedreich's Ataxia Research Alliance (FARA) is proud to announce the recipients of this year's Ataxian Athlete Initiative (AAI). The AAI is a unique program that provides adaptive cycling equipment to people with ataxia who have demonstrated a strong desire to stay healthy and fit despite their progressive disabilities.

Friedreich's ataxia (FA) is a rare disease that affects balance and coordination and has symptoms such as vision and hearing loss and often results in life shortening heart complications.

This year, the AAI was sponsored by Catrike, UVA Sun Systems, Front Burner Brands, The Texas Irish Foundation, and a new partnership with Global Genes through their RARE Patient Impact Grant program which helped fund the US recipients.

"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. We hope to expand the grant program each year so we can support more worthy projects in the rare community," said Amanda Knitter, Director of Patient Advocacy at Global Genes.

AAI grants are administered through a competitive application process. Applicants research the most appropriate adaptive cycling equipment to suit their abilities and describe how such equipment would help them to 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," said Endrit Januzaj of Desan, Kosovo.

"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," said Liam Dougherty, a previous AAI grant recipient.

The AAI has provided equipment for 33 individuals since 2009. In 2016, the AAI funded 9 grants for adaptive cycling equipment, touching seven states and two continents. Alena Wolfson of Glendale, Arizona; Candace Honeycut of Grinnell, Iowa; Greg Ostrom of Glencoe, Ontario, Canada; Jolin Kowalski of Vicksburg, Michigan; Joshua Lamascus of Marina, California; Leslie Ballard of Yuma, Tennessee; Marinda Cauley of Chatanooga, Tennessee; Jacob Ferguson of Montgomery, Texas; and Endrit Januzaj of Desan, Kosovo.

Visit curefa.org/aai for more information and to view more photos of past recipients. The next application cycle begins in Spring 2017.

About Friedreich's Ataxia Research Alliance

The Friedreich's Ataxia Research Alliance (FARA) is a national, public, 501(c)(3), non-profit, tax-exempt organization dedicated to curing Friedreich's ataxia (FA) through research. FARA grants and activities provide support for basic and translational FA research, pharmaceutical/biotech drug development, clinical trials, and scientific conferences. FARA also serves as a catalyst, between the public and scientific community, to create worldwide exchanges of information that drive medical advances. For more information about FARA, visit curefa.org.

facebook.com/curefa | @CureFA_org | CureFA.org

About Global Genes - Allies in Rare Disease

Global Genes is a leading rare disease patient advocacy organization. The group's mission is to eliminate the challenges of rare disease, by providing patients with educational tools, building awareness, providing critical connections, and funding programs to advance and support patient care and early investigative research. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 350 million people worldwide.

The following files are available for download:

Contact Information

  • For media inquiries contact:
    Kyle Bryant
    Spokesperson
    Friedreich's Ataxia Research Alliance (FARA)
    kyle@rideataxia.org
    916-203-3238