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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.

 

The Cake Eaters

Friedrich's ataxia, a progressive neurological disease that causes loss of muscle control, has entered the spotlight of the independent film world.

The Cake Eaters features as one of its central characters 16-year-old Georgia, who has Friedrich's ataxia. She is portrayed brilliantly by the young actress Kristen Stewart, who captures the disease's characteristic rag-doll weakness and awkward gait while projecting a smoldering adolescent sexuality. First-time director Mary Stuart Masterson, best known for her nuanced acting in Fried Green Tomatoes and Benny and Joon, videotaped interviews with real teenagers with Friedrich's ataxia to help prepare Stewart for the role.

But this slow moving and insightful film refuses to buy into the after-school special narrative of the heroic teen who overcomes her disability. Georgia's disability will not be overcome. The disease will persist until, as she puts it, “my heart gives out, and I don't know when that will be.” And Georgia is not always heroic. Her quest to seduce Beagle, a school cafeteria worker played with depth and intelligence by Aaron Stanford, at first barely acknowledges his humanity. She wants to know what sex is like, and he is the means to that end.

Read More: The Cake Eaters

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...
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