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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.

All-volunteer IT Coalition Builds Computer Network Critically Needed for Friedreich’s Ataxia Medical Research

Washington, D.C. — It’s called FACE IT or the Friedreich’s Ataxia Clinical Enterprise (FACE) IT Program, and it may someday result in the saving of lives of Friedreich’s ataxia patients.

The FACE IT program involves a creative technical application of IT software and hardware, along with the talents and energies of an all-volunteer IT workforce of EDS, Microsoft and university employees. They are working with medical experts across the country in developing a secure networked computer system to automate the collection and sharing of research data at medical centers across the country.

Scientists Herald Beginning of the "Treatment Era" for Friedreich's Ataxia

Washington, D.C. — Researchers from around the world are collaborating in making real progress they hope will lead first to helpful treatments and then to more curative therapies for Friedreich's ataxia, a rare, degenerative, neurological disease that puts its victims in wheelchairs and often leads to death in early adulthood. The latest research is detailed in the current issue of the FARA Update highlighting an international conference that brought together 100 top researchers from around the world.

"There are really a number of promising approaches underway exploring prospective gene-based and protein-based repair mechanisms for Friedreich's ataxia," said Ronald Bartek, President of the Friedreich's Ataxia Research Alliance. "Friedreich's research is also drawing upon a wealth of knowledge gained from other neurological diseases and even cancer research that is bringing us closer to finding an effective treatment."

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