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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.

Friedreich’s Ataxia Research Alliance Research Grants Reach $2-million Mark

Arlington, Virginia — The Friedeich’s Ataxia Research Alliance (FARA) has awarded about $1 million in research grants in 2004, bringing the total grants awarded to $2 million since FARA was established in 1998. This research is targeted at scientific efforts to find ways to slow, stop and reverse progression of Friedreich’s ataxia.

"As a result of the generosity of donors, the tireless commitment of the people conducting fundraisers, co-funding by Seek A Miracle / MDA, and the increasing tempo of Friedreich’s ataxia scientific developments, we are making exciting progress in a number of promising research areas," said FARA president Ron Bartek. "We’re seeing marvelous advances in the scientific community."

Researcher Targets DNA Replication for Better Understanding of Friedreich’s Ataxia

Chicago, Illinois — Maria Krasilnikova, a research assistant professor at University of Illinois at Chicago, is studying the underlying DNA replication of Friedreich’s Ataxia to help in the search for new drugs to treat the disorder.

In Friedreich’s Ataxia, the DNA sequence multiplies out of control. Friedreich’s is the most commonly inherited form of ataxia and causes progressive damage to the nervous system. It causes muscle weakness and loss of coordination in the arms and legs; impairment of vision, hearing and speech; scoliosis (curvature of the spine), diabetes; and a life-threatening heart condition. Average life expectancy is reduced to early adulthood.

Explosion of Research Triggers Hope on "Friedreich’s Ataxia Awareness Day" — May 15

Washington, D.C. — Although there is no effective treatment or cure available, Friedreich’s ataxia patients and families have more reason for real hope as they prepare events around the country on "Friedriech’s Ataxia Awareness Day," May 15th. The day is recognized in a Congressional proclamation and various events around the country. "An extraordinary explosion of research insights has followed the identification of the Friedreich’s ataxia gene in 1996," said U.S. Rep Robert E. Andrews of New Jersey in introducing the Congressional proclamation. "Growing cooperation among organizations supporting the research and the multidisciplinary efforts of thousands of scientists and health care professionals provide powerful evidence of the increasing hope and determination to conquer Friedreich’s ataxia. There is also a growing conviction that treatments can and will be developed for this disease and that the resulting insights will be broadly applicable across a wide range of neurological disorders such as Parkinson’s, Huntington’s and Alzheimer’s."

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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