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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.

 

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."

Read more: Fund-raiser to benefit study of boy's disease

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

Social Security Announces Nationwide Launch of Compassionate Allowances

Michael J. Astrue, Commissioner of Social Security, today announced the national roll-out of the agency’s Compassionate Allowances initiative, a way to expedite the processing of disability claims for applicants whose medical conditions are so severe that their conditions obviously meet Social Security’s standards. “Getting benefits quickly to people with the most severe medical conditions is both the right and the compassionate thing to do,”

Commissioner Astrue said. “This initiative will allow us to make decisions on these cases in a matter of days, rather than months or years.” Social Security is launching this expedited decision process with a total of 50 conditions. Over time, more diseases and conditions will be added. A list of the first 50 impairments -- 25 rare diseases and 25 cancers -- can be found at www.socialsecurity.gov/compassionateallowances . Before announcing this initiative, Social Security held public hearings to receive information from experts on rare diseases and cancers. The agency also enlisted the assistance of the National Institutes of Health.

Read More: Social Security Announces Nationwide Launch of Compassionate Allowances

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