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."
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. Depending on severity, average life expectancy is reduced to early adulthood.
FARA is supporting research on a number of projects to slow the disease including antioxidants and other drugs that are moving from drug screening to animal models and the large human trials needed to obtain approved therapies.
Much of the Friedreich’s ataxia research focuses on increasing the availability of the frataxin protein to stop progression of the disease. Researchers are investigating gene-based approaches to delete, repair or stabilize mutations so as to increase production of the protein. Other scientists are working to synthesize the protein and deliver it to the mitochondria directly.
FARA is also consulting with experienced experts in drug discovery, drug development and drug marketing to ensure that the appropriate mechanisms are in place to take beneficial therapies from the laboratory to the patients.
Details of FARA-sponsored research can be found online at http://www.FAResearchAlliance.org
The Friedreich’s Ataxia Research Alliance (FARA) is a 501(c)(3), non-profit, charitable organization dedicated to accelerating research leading to treatments and cures for Friedreich's Ataxia (FRDA) and the related sporadic ataxias. http://www.FAResearchAlliance.org
President, Friedreich’s Ataxia Research Alliance