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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.

 

Cyclists Bring Attention to Disabling Disease -- Friedreich's Ataxia

Cross-country cyclists ended a 650-mile trek in Las Vegas Thursday to draw attention to a disease most of us know nothing about. It can leave a person disabled at a very young age.

Among the cyclists, a young man named Kyle Bryant, who isn't letting Friedreich's ataxia slow him down. Bryant led the way, as 21 cyclists pedaled up to the Flamingo, ending a ride that began in Sacramento two weeks ago.

Although Bryant's legs have limited movement, a specially designed bike allows him to go great distances -- with the purpose of getting the word out about ataxia.

"It directly affects me and my whole family. And we feel very strongly that this disease deserves attention, and it effects a lot of really great people that we've met over the years," said Bryant.

Bryant was diagnosed with Friedreich's ataxia about 10 years ago. The debilitating disease often occurs between the ages of 5 and 15. It affects muscle coordination and sometimes leads to heart failure in its young victims.

Read More: Cyclists Bring Attention to Disabling Disease -- Friedreich's Ataxia

Cyclist with Rare Neuromuscular Disorder to Arrive in Las Vegas March 27 Following Cross-Country Journey

Kyle Bryant and a team of 15 cyclists will arrive at the Las Vegas Flamingo Hotel, North Tour Lobby Entrance, Thursday March 27 at noon, completing a 600+ miles cross-country journey to draw attention and raise research funds to find a cure for the rare neuromuscular disorder Friedreich's ataxia.

"There is a new optimism in our community of Ataxians that we can beat FA," said Bryant. "I am one of the lucky few who still has considerable ability. I plan to take advantage of my ability as long as I can."

The riders began their journey March 15 from the California state capitol in Sacramento. The first day approximately 50 riders and 150 supporters participated, and a core group of 15 riders have continued on with the cross-country journey.

Read more: Cyclist with Rare Neuromuscular Disorder to Arrive in Las Vegas March 27 Following Cross-Country...

Ride Ataxia II

Ride Ataxia II is a 13 day bike trip covering 600+ miles to raise awareness and research funds for Friedreich’s ataxia. The Ride starts on March 15, 2008 in Sacramento, CA and concludes in Las Vegas, NV on March 27, 2008. Come out and cheer on the riders or follow their progress on the team blog. The Ride travels the following route:

Day Start Location Passing Through Stop Location
3/15 Sacramento   Lodi
3/16 Lodi Modesto Turlock
3/17 Turlock Merced Madera
3/18 Madera   Fresno
3/19 Fresno Visalia, Tulare Hanford
3/20 Hanford   Wasco
3/21 Wasco   Bakersfield
3/22 Bakersfield   Tehachapi
3/23 Tehachapi California City Boron
3/24 Boron Barstow Yermo
3/25 Yermo   Baker
3/26 Baker   Primm
3/27 Primm   Las Vegas

Cyclist with Rare Neuromuscular Disorder to Begin Second Cross-Country Journey from Sacramento

Sacramento — Sacramento native Kyle Bryant and a team of 35 riders will leave from the California state capitol Saturday at 9 a.m. to begin a cross-country journey to draw attention and raise research funds to find a cure for the rare neuromuscular disorder Friedreich's ataxia.

"There is a new optimism in our community of Ataxians that we can beat FA," said Bryant. "I am one of the lucky few who still has considerable ability. I plan to take advantage of my ability as long as I can."

The riders will begin assembling at 8 a.m. at the Southwest corner of Capitol Park (corner of 10th and N) Saturday, and will kick off the ride with a celebration that will include the dramatic beginning of the adventure. The first day approximately 35 riders and 100 supporters are expected to participate, and a core group of 15 riders will continue the cross-country journey during the next twelve days.

Read more: Cyclist with Rare Neuromuscular Disorder to Begin Second Cross-Country Journey from Sacramento

EDS Foundation Awards $40,000 Grant to Friedreich's Ataxia Research Alliance

Plano, TX — EDS today announced that the EDS Foundation has approved a $40,000 grant to the Friedreich's Ataxia Research Alliance (FARA) to fund the organization's Website redesign and upgrade, as well as enhancements to its patient registry. Both projects will build upon technologies created and supported by EDS volunteers and will facilitate FARA's mission of education and advancement in treatments and a cure for Friedreich's Ataxia, a rare genetic disorder causing neurodegeneration. This marks the first year that the EDS Foundation has supported the Virginia-based nonprofit organization.

"We are thankful that the EDS Foundation has become the largest sponsor of this project, which will help us redesign our Website, and also facilitate recruitment for clinical trials through our patient registry," said Ron Bartek, president of the Friedreich's Ataxia Research Alliance. "This information technology solution will increase FARA's access to key audiences and support a growing technical infrastructure that has been developed by EDS volunteers and for which FARA is extremely grateful."

Read more: EDS Foundation Awards $40,000 Grant to Friedreich's Ataxia Research Alliance
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