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FARAFARA Cure FA

 

News & Press Releases

Here you will find the most recent organizational news from FARA, including information on events, and awareness and advocacy initiatives. To locate an article from a certain date, please use the archives on the right side of your screen.

 

FARA and the Burrows Hill Foundation Announce the Recipients of the 2018 Ataxian Athlete Initiative (AAI)

AAIDOWNINGTOWN, PA-- The Friedreich's Ataxia Research Alliance (FARA) in partnership with the Burrows Hill Foundation (burrows-hill.org) have partnered once again to distribute adaptive cycling equipment through Ataxian Athlete Initiative (AAI). The AAI is a unique program serving 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, The Texas Irish Foundation and The Burrows Hill Foundation. The Burrows Hill Foundation generously provided over 80% of the funding for the 2018 AAI.

Read more: FARA and the Burrows Hill Foundation Announce the Recipients of the 2018 Ataxian Athlete...

Invite and They Just Might Come!

The FA community rocks when it comes to fundraising to support research. The rideAtaxia program, Energy Ball and grassroots community events have made it possible for several clinical trials to be currently underway. Those amazing fundraising efforts also offer another incredible benefit, the opportunity to build relationships with elected officials throughout the country.

Elected officials are there to support their constituents. If you have a question about a government program, need help resolving a problem with a public agency, or would like to voice your opinion on legislation, your representative wants to hear from you. But, they also have a real interest in getting to know the community they serve as well as the constituents within it. So, if invited, they just might come!

Read more: Invite and They Just Might Come!

FARA job posting - Research Portfolio Manager

Click to view PDF
FARA is seeking a full time Research Portfolio Manager.
Please click HERE for more information.
 

For Father's Day, this dad just wants a cure for his daughter


INDIANAPOLIS — Virgil Harris would do anything for his daughter, his baby. Doesn't matter that she's not a baby at all but a 23-year-old college student.

Of course he's proud of her. She's bright, funny and goal-oriented. But he's worried, too. Jazmyne "Jazz" Harris was an active, clumsy child — the kind of clumsiness that couldn't be blamed on pre-teen awkwardness. She played four sports — basketball, volleyball, kickball and softball — but she would sometimes fall during games for no apparent reason, then get right back up.

Read more HERE

North Branford siblings speak-out about growing-up with devastating disabilities


NORTH BRANFORD, Conn. (WTNH) - A North Branford mom, and her two kids, are raising awareness about what it's like to grow-up with a disability. Both Sam and Alex Bode have Friedreich's Ataxia which causes progressive damage to the nervous system.

"For eight years - 7 years and 10 months, they were just like everybody else," said Mary Caruso, explaining that her two children were active, riding bikes and playing with friends. "I started noticing subtle things like going through a doorway was difficult... walking straight was difficult. Sam’s gait was starting to go off."

Read more HERE

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