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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.

 

Vice - President and Chief Executive for Science

Job Title: Vice - President and Chief Executive for Science

Overview The Friedreich’s Ataxia Research Alliance (FARA) is a world leader in supporting scientific research leading to treatments and a cure for Friedreich’s Ataxia and related conditions. Fried reich’s ataxia (FA) is a debilitating , life - shortening , degenerative, neuro - muscular disorder characterized by loss of coordination in the arms and legs; energy deprivation; impairment of vision, hearing, and speech; aggressive scoliosis; diabetes, and a s erious heart condition. Our mission is to marshal and focus the resources and relationships needed to cure this disease by raising funds for research, promoting public awareness, and aligning scientists, patients, clinicians, networks, government agencies, pharmaceutical companies and other organizations dedicated to curing FA and related diseases. We are seeking a goal - oriented professional with commitment to FA research to oversee and enhance our scientific programs and partnerships and to ensure that ou r strategic research priorities are efficiently and effectively advanced.

Read More: Vice - President and Chief Executive for Science

'Working for Lindsay' campaign pays off

Students at Hancock Day School raised $2,500 to fight a disease that threatens the life of a single mom who attended the school years ago.

Lindsay Ashman has the neurological disorder Friedreich's Ataxia. The disease has put Ashman in a motorized wheelchair, slurred her speech and threatens her life.

The money raised by the 195 students will go to the Friedreich's Ataxia Research Alliance, which is working to find a treatment or cure for the life-shortening disorder.

Ashman and her 5-year-old son Clay Proper visited Hancock Day School, 5526 Skidaway Road, on Thursday to show their gratitude.

Read More: 'Working for Lindsay' campaign pays off

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
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