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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.

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.

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."

Kyle Bryant $100,000 Award to Australian / UK Collaboration to Test Possible Friedreich's Ataxia Antioxidant Treatment in Mouse Model

The National Ataxia Foundation (NAF) and the Friedreich's Ataxia Research Alliance (FARA) announced today that the $100,000 Kyle Bryant Award will go to translational research being done by Australian researchers and their British collaborators into the catalytic antioxidant CTMIO as a possible treatment for Friedreich's ataxia (FRDA).

The research proposal was submitted by Dr. Nuri Gueven at Queensland Institute of Medical Research in Australia. The title of the proposal is "Use of a novel catalytic antioxidant, CTMIO, in a GAA repeat mouse model of FRDA." The mouse model and application of CTMIO to the mice will be provided by the London team of Dr. Mark Pook while the analysis will be done in Dr. Nueven's lab in Australia.

Assistance dog provides learning situation for all

Zane is friendly and happy. He canvasses the halls of Perrysburg Junior High like an old-timer, even though he's only been there a little more than a month.

The period of adjustment is over - for him and for the school. Zane lounges on the floor as if the place is home. Students and staff know better than to bother Zane, at least when he's working.

That temptation is a tough one to avoid, too, because Zane is popular, gregarious, and handsome.

But it's important because Zane, a two-year-old black Labrador retriever, is an assistance dog, the first Perrysburg schools have had.

He assists a boy named Zac Zies, a sixth-grader afflicted with a rare genetic disease called Friedreich's ataxia. It causes muscle weakness and loss of coordination.

Read More: Assistance dog provides learning situation for all

Page 81 of 86


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