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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.

 

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

BGC Partners, Inc. Selects the Friedreich's Ataxia Research Alliance as a Charity Day Recipient

BGC Partners, Inc. selected the Friedreich's Ataxia Research Alliance (FARA) to be one of their 2008 Charity Day recipients. BGC's Charity Day was originally conceived as a way to raise money for the Cantor Relief Fund, by donating a full day's global brokerage commissions to the Fund. Today the event has evolved and funds raised now also go to dozens of other worthy causes around the world.

In 2007 BGC raised over $6 million globally. In New York the event is held in their Wall Street offices, with invited celebrity guests acting as brokers for the day. With the guidance of BGC's licensed brokers, they carry out actual trades of bonds, foreign exchange and other financial instruments with BGC clients- Wall Street's biggest banks. On September 11, 2008, Sean Landeta- retired NY Giants punter, Tiki Barber- retired NY Giants running back and current Today Show correspondent, and Rich Monteleone- NY Yankees Special Pitching Instructor represented FARA on the trading floor for Charity Day.

Read more: BGC Partners, Inc. Selects the Friedreich's Ataxia Research Alliance as a Charity Day Recipient

EDS, Employees garner FARA Partner of the Year honor

The young sufferers of Friedreich's Ataxia (FA) endure muscle weakness and loss of coordination, vision impairment, slurred speech and heart disease. These children generally show symptoms of the disease between the ages of five and 15. Currently, there is no treatment or cure for this rare genetic disease. EDS, an HP company, and 60 employees have rallied behind the FA cause in numerous ways. In recognition of that effort, EDS was recently nam ed Partner of the Year by the Friedreich's Ataxia Research Alliance (FARA). Founded in 1998, FARA is an all-volunteer organization that supports education and research into treatment and a cure for FA. EDS volunteers are giving hundreds of hours of their own time to raise money and awareness for the cause, develop technology solutions for the alliance, and serve on its board. EDSers have also provided communications support, a technology plan and consulting for a FARA quarterly newsletter. In addition, the EDS Foundation awarded FARA a grant in 2007.

Read More: EDS, Employees garner FARA Partner of the Year honor

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