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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.


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.

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

Alliance Charities, Inc. Introduces a Way to Support Causes in Tough Economic Times

It comes as no surprise as the economy continues to slide, taking financial security with it, giving is on the decline. That's bad news for nonprofits. The good news, however, is that Alliance Charities, Inc. (http://www.alliancecharities.org), a 501(c)(3) organization, has a way for anyone to support causes they care about without actually giving out-of-pocket.

By partnering with retailers like Wal-Mart, Target, Amazon, eBay, Staples, Gap, Disney, Starbucks and many others — and by utilizing Google Custom Search — Alliance Charities enables online shoppers to contribute to U.S.-based nonprofits with every purchase they make.

For shoppers, there is no added expense. Funding comes from commissions earned on purchases. Affiliate retailers send Alliance Charities commissions based on shoppers' purchases of items they would normally buy, and Alliance Charities distributes funds to supported charities.

Read More: Alliance Charities, Inc. Introduces a Way to Support Causes in Tough Economic Times

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