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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.


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

Gill Family Wins FARA a Spot on Jimmie Johnson’s Helmet of Hope To Be Worn During NASCAR's Pepsi 500 on August 31, 2008

The Gill Family of Parkville, Missouri wrote a winning essay for the Helmet of Hope contest sponsored by The Jimmie Johnson Foundation to showcase the charity most important to the applicant family. FARA was one of a total of twelve charities selected from the fan submissions and the FARA logo will be displayed on Jimmie's (NASCAR) helmet during the Pepsi 500 on August 31, 2008 at the Auto Club Speedway. Susan Gill, mother of Rachel (FA), enlisted the support of her family to submit essays on why the Friedreich’s Ataxia Research Alliance (FARA) was important to them, and the essay of Rachel’s uncle Neil Hanneman (a former stock car racer) was selected as one of the winning entries. Hanneman writes, “Seeing the FARA logo on Jimmie's helmet would give some visibility to finding a cure for a life- shortening disease that affects children while giving hope and enjoyment to those kids that are afflicted by FA." Watch for the FARA logo on Jimmie’s helmet as the #48 car speeds around the track.

Additional information on FARA and the Helmet of Hope can be found on www.jimmiejohnsonfoundation.org

Fans may bid on the one-of-a kind, race-worn helmet at www.ebay.com/jimmiejohnsonfoundation. The auction runs through Tues., Aug. 26 at 11:40 p.m. ET with proceeds benefiting San Diego Habitat for Humanity.

A Special Ticket Package is Available Through The Johnson Foundation. To Get Info / Purchase Tickets Click: Auto Club Speedway and select Jimmie Johnson Foundation Package, then click More Info.

$250,000 in Kyle Bryant Translational Research Awards Announced Today

The National Ataxia Foundation (NAF) and the Friedreich's Ataxia Research Alliance (FARA) announced today that, this year, they are co-funding two $125,000 Kyle Bryant Awards that are going to promising translational research in Friedreich’s Ataxia (FA).  One award is being made to Repligen Corporation, Waltham MA, who 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 goes 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.

Repligen’s research proposes to develop methods to use with the FA mouse models in order to select which HDAC inhibitor will be best to test in FA patients and what doses of that HDAC inhibitor will be most likely to maximize frataxin protein levels while minimizing toxicity. Drs. Subha V. Raman and Roula al-Dahhak, recognizing that heart disease in FA is poorly understood, have focused their research project on testing new ideas regarding how heart disease develops in FA, earlier detection of the heart disease, and development of new prevention and treatment strategies that would reduce heart-related disability and death.

CANADA- FIRST TO APPROVE DRUG IN FRIEDREICH’S ATAXIA

The Muscular Dystrophy Association (MDA) and the Friedreich's ataxia Research Alliance (FARA) announced this week that, on July 24, the antioxidant compound idebenone received conditional market approval for the treatment of Friedreich's ataxia (FA) in Canada but failed to obtain such approval in Europe.

Idebenone, which is related to the natural substance coenzyme Q10, was developed by the Swiss pharmaceutical company Santhera as SNT-MC17.

The company is testing the compound, which is intended to improve cellular energy production and reduce oxidative stress, in FA, Duchenne muscular dystrophy (DMD) and Leber’s hereditary optic neuropathy.

In a phase 2 study in patients with FA, idebenone was generally well tolerated and associated with improvement in neurological function, as well as scores measuring activities of daily living.

A phase 3 trial in FA remains open.

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