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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.

 

Research Progress Fuels Preparations for "Friedreich's Ataxia Awareness Day"

Washington, D.C. — Friedreich's ataxia patients, families, and their communities eagerly welcome the approach of "Friedreich's Ataxia Awareness Day" on May 16th. The third Saturday of May is recognized i n Congressional and state proclamations and various activities across the country as "Friedreich's Ataxia Awareness Day.” Friedreich’s ataxia (FA) is a degenerative, neuromuscular disease that gradually robs patients of their ability to walk, compromises speech, hearing, and vision, and often comes with complications of serious diabetes and he art disease.

Following the identification of the Friedreich’s ataxia gene in 1996, research scientists have learned a great deal about the disorder. We now know what defects in the gene cause the disease, what protein the gene is supposed to produce, what that protein is supposed to accomplish, and why a shortage of the protein results in the cell death that leads to the disease symptoms. With this knowledge, researchers are better equipped to focus treatment development at the causes of the disease with the aim to slow, stop and reverse the effects of Friedreich’s ataxia.

Read More: Research Progress Fuels Preparations for "Friedreich's Ataxia Awareness Day"

Ride Ataxia III - Portland

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Ataxia is a disorder that may affect the fingers, hands, arms, legs, body, speech, and eye movements. Ride Ataxia's Kyle Bryant knows all too well the embarrassment that this disorder can bring. When he was younger, people chalked-up Kyle's incoordination to clumsiness. When he was diagnosed with Friedrich's Ataxia, Kyle felt like his life was over as there is no known cure. However, he discovered strenuous exercise helps alleviate his symptoms. Kyle started Ride Ataxia to help fund research and understanding of this complicated disorder. The Ride Ataxia Cycling Team has traveled 3,100 miles in the past two years raising invaluable Ataxia awareness and bringing together $350,000 in research funds in collaboration with the National Ataxia Foundation and the Friedrich's Ataxia Research Alliance. For more information call 484-875-3015.

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Cyclist with Rare Neuromuscular Disorder to Arrive in Seattle March 19 Completing 4 Day Cycling Journey

Seattle—Kyle Bryant and a team of 65 cyclists will arrive at the Doubletree Hotel Seattle Airport Thursday, March 19 at 2pm completing a 200 mile cycling journey to draw attention and raise research funds for the rare neuromuscular disorder Friedreich’s ataxia with which Bryant and other teammates, including Seattle native Sam Bridgman, are affected. Bridgman is a senior at Nathan Hale High School, works for the Seattle Mariners and will be cycling this year with his family and three of his close friends.

Bryant stated, “In 2009 Ride Ataxia looks forward t o continued success raising awareness, collaboratively funding research, and em powering ataxians and others to seek their fitness goals and have fun doing it.” The riders began their journey March 16 on the Oregon Health and Science University Campus in Port land. Bryant and the Ride Ataxia team will conclude the journey at the National Ataxia Foundation’s 52nd Annual Membership Meeting.

Read More: Cyclist with Rare Neuromuscular Disorder to Arrive in Seattle March 19 Completing 4 Day Cycling Journey

Cyclist with a Rare Neuromuscular Disorder to Begin Third Cycling Journey from Portland

Sacramento native Kyle Bryant and a team of 65 riders will leave from the Oregon Health & Science University (OHSU) campus Monday, March 16 at 9 a.m. beginning a cycling journey to draw attention and raise research funds for the rare neuromuscular disorder Friedreich’s ataxia- with which Bryant and other teammates are affected. It will be a 4-day trip covering 200 mile s. The riders will begin assembling for their third annual cycling journey at 7 a.m. at the Center of Health and Healing on the OHSU Campus in Portland, Oregon, and will kick off the ride with addresses from Bryant, episodic ataxia researchers at OHSU- Dr. John Nutt and Dr. James Maylie as well as Dr. Lawrence Schut- the National Ataxia Foundation’s Medical Director.

There will also be a photo opportunity prior to the team’s departure. Bryant and Team Ride Ataxia will conclude their rid e in Seattle, WA on March 19, 2009 at the National Ataxia Foundation’s 52nd Annual Meeting being held at the Doubletree Hotel Seattle Airport.

Read More: Cyclist with a Rare Neuromuscular Disorder to Begin Third Cycling Journey from Portland

New Film, Directed by Mary Stuart Masterson, Features Kristen Stewart as a Young Woman with the Neuro-degenerative disease Friedreich's ataxia

The Cake Eaters, a film directed by Mary Stuart Masterson, written by Jayce Bartok and featuring an incredible ensemble c ast including Kristen Stewart (Twilight) as a young woman with the neuro-degenera tive disease Friedreich’s ataxia (FA), will be released in select cities including New York, Los Angeles, San Francisco and Chicago (among others) on March 13th starting with a sneak preview in Los Angeles on March 11th.

Friedreich’s ataxia is a progressive debilitating li fe shortening, neuro-muscular disorder that robs people of the ability to walk, and can compromise their ability to perform the daily activities many of us take for granted. Scoli osis, diabetes, and serious heart disorders are also common with FA which affects an estimated 5,000 children and adults in the United States.

Read More: New Film, Directed by Mary Stuart Masterson, Features Kristen Stewart as a Young Woman with the Neuro-degenerative disease Friedreich's ataxia

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