Tucson, Arizona — The Muscular Dystrophy Association (MDA) and the Friedreich's Ataxia Research Alliance (FARA) announced today that they will accelerate their joint efforts to combat Friedreich's ataxia, a devastating neuromuscular disorder affecting both children and adults.
Leaders of the organizations met at the MDA national headquarters in Tucson to agree on the most expeditious means for enhancing and advancing their partnership. The discussion centered on a number of leading therapeutic approaches that are expected to be in clinical trials within the next year and that hold great promise for the development of a therapy for Friedreich's ataxia. The two organizations agreed that these clinical projects show a real prospect for effective treatment and that, with a fully enhanced partnership, the MDA and FARA will achieve that goal much sooner.
"We're eager to advance this initiative, which represents an enhancement of our ongoing policy to establish collaborative efforts with agencies of the federal government, industry and other voluntary organizations to accelerate critical areas of neuromuscular disease research," said Gerald C. Weinberg, MDA senior vice president and chief operating officer. "We are especially pleased to accelerate our partnership with FARA which has been with us at the forefront in funding and coordinating Friedreich's ataxia research."
"MDA has long been a leader in supporting Friedreich's ataxia research," FARA President Ronald J. Bartek, said. "We are thrilled that MDA and FARA have achieved such ready agreement on an enhanced partnership in funding the most promising research objectives. We all recognize that, acting together, we will cross the finish line of treatment for Friedreich's ataxia far sooner than would otherwise be possible."
Meeting participants included officers and directors of MDA and FARA; Nicholas A. Johnson, MDA National Task Force on Public Awareness Member, MDA 2004 National Personal Achievement Award Recipient and Senior Mechanical Engineer of BR+A Consulting Engineers, LLC; and Guy Miller, Chairman, CEO of Edison Pharmaceuticals. Edison Pharmaceuticals recently was granted FDA orphan drug status for EPI-A0001 and is advancing it as a first-line treatment for Friedreich's ataxia.
The Friedreich's Ataxia Research Alliance (FARA) is a 501(c)(3), non profit, tax-exempt organization dedicated to the pursuit of educational, scientific and research activities leading to treatments for Friedreich's ataxia. FARA also serves as a patient advocacy group to educate the public, elected representatives, and other government officials regarding Friedreich's ataxia and the importance of funding biomedical research. FARA works closely with the National Institutes of Health and other organizations in the United States and elsewhere that are supportive of Friedreich's ataxia research. http://www.FAResearchAlliance.org
MDA is a voluntary health agency working to defeat more than 40 neuromuscular diseases through programs of worldwide research, comprehensive services, and far-reaching professional and public health education. Friederich's ataxia is one of the diseases covered by the Association. To find out more about MDA, call (800) 572-1717 or visit www.mda.org.
President, Friedreich’s Ataxia Research Alliance
Director of Public Information, MDA