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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.

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

Fund-raiser to benefit study of boy's disease

By the time Zac Zies was in preschool and kindergarten, he started having trouble walking and tripped often.

"All the doctors told me 'He's a boy - don't worry about it,' " recalled his mother, Suzy Zies.

Yet Mrs. Zies insisted there was more wrong with her son than a typical active boy's coordination problems. The Perrysburg family was referred to the Mayo Clinic in Rochester, Minn., where specialists in 2001 determined Zac has a degenerative neuromuscular disorder called Friedreich's ataxia.

"Initially, I thought they were going to tell me I'm nuts," Mrs. Zies said of diagnosing the couple's only child. "If only that were the case."

Perrysburg Junior High teachers spend day in wheelchairs

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Five teachers at Perrysburg Junior High School spent Tuesday in wheelchairs to raise awareness about Friedreich's Ataxia, a life-shortening, degenerative neuro-muscular disorder.

Zac Zies, 13, a student at the junior high school, suffers from the disorder, and a luncheon is scheduled for 11:30 a.m. Saturday, Feb. 7, at the Outback Steakhouse, 5200 Monroe St. in Toledo to raise money and awareness of Friedreich s Ataxia. All proceeds will go to benefit Friedreich s Ataxia Research Alliance to help find a cure for the debilitating disease that robs the life of one in 50,000 people in the United States.

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Cyclist with Rare Neuromuscular Disorder to Begin Third Cycling Journey

Kyle Bryant and Team Ride Ataxia are preparing to begin their third cycling journey to draw attention and raise research funds to find a cure for the rare neuromuscular disorder Friedreich' s ataxia (FA) with which Bryant and other teammates are affected. The team will begin the ride on March 16, 2009 at Oregon Health Sciences University in Portland, Oregon and conclude in Seattle, Washington on March 19, 2009 at the National Ataxia Foundation's 52nd Annual Meeting.

It will be a 4-day trip covering 200 miles . Bryant and Team Ride Ataxia have cycled 3,100 miles cross country in the past two years. In 2007, Bryant and his father, Mike Bryant completed a 2,400 mile bike ride visiting FA researchers and patient families from La Jolla, California to Memphis, Tennessee. In March 2008, the Bryants were joined by many new teammates including 6 ataxians on their bike ride from Sacramento, California to Las Vegas, Nevada. The funds raised by the team on their cross-country “Ride Ataxia” have gone directly to the annual Kyle Bryant Research Award for translational research in FA.

In 2008, the team raised $142,000 and the National Ataxia Foundation and the Friedreich’s Ataxi a Research Alliance added sufficient funds to bring the award total to $250,000. Ride Ataxia, NAF and FA RA co-funded two $125,000 awards in 2008. One award was made to Repligen Corporation, Waltham MA, which in collaboration with an international team of researchers is advancing compounds called HDAC inhibitors that target increased levels of frataxin – the protein that is severely reduced in FA. The second award went to a team of investigators at Ohio State University, Drs. Subha V. Raman and Roula al- Dahhak, who propose a series of sophisticated imaging studies to better understand, prevent and treat heart disease in FA.

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

Santhera Enrolls Last Patient in Pivotal US Phase III with SNT-MC17/Idebenone in Friedreich’s Ataxia

Liestal, Switzerland – Santhera Pharmaceuticals (SIX: SANN), a Swiss specialty pharmaceutical company focused on neuromuscular diseases, announced today that it has closed the recruitment for its six month pivotal Phase III trial with SNT-MC17 (INN: idebenone) in Friedreich’s Ataxia in the United States. The two study centers at the Children’s Hospital of Philadelphia and the School of Medicine of the University of California, Los Angeles, have enrolled a total of 70 patients. The strong support from patient advocacy groups was instrumental in considerably exceeding the original recruitment target of 51 individuals.

The IONIA ( Idebenone effects On Neurological ICARS Assessments) trial is a double-blind, randomized, placebo-controlled study of six months duration investigating the efficacy of two doses of SNT-MC17/idebenone compared to placebo. The primary endpoint is the change in the International Cooperative Ataxia Rating Scale (ICARS), a neurological scale, where the difference between baseline and en d of treatment for each of the dosing groups will be compared with the change in the placebo group. The IONIA study also investigates additional neurological endpoints as well as activities of daily living parameters and cardiac outcomes. The study protocol incorporates advice provided by the US Food and Drug Administration under Special Protocol Assessment. The six month treatment period will be followed by a one month follow-up period. As of today, more than twenty patients have already completed the trial and are enrolled into an open label extension study on the high dose level.

Read More: Santhera Enrolls Last Patient in Pivotal US Phase III with SNT-MC17/Idebenone in Friedreich’s Ataxia

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