Alliance is part of an MDA initiative to establish new collaborative partnerships
FOR IMMEDIATE RELEASE
CHICAGO, September 2, 2015 – The Muscular Dystrophy Association (MDA) and the Friedreich's Ataxia Research Alliance (FARA) today announced a partnership that will pave the way for advancements in Friedreich's Ataxia (FA) research, therapeutic development and clinical care, thus deepening understanding of the disease for patients and medical professionals.
The partnership demonstrates a major step in MDA's commitment to forming strategic alliances with for- and non-profit organizations. FA is one of the neuromuscular diseases MDA fights as an umbrella organization with a big picture perspective on finding treatments and cures for kids and adults with weakening physical strength and loss of mobility that make the most basic daily activities extraordinarily challenging.
"MDA is intentional in pursuing collaboration and enthusiastically embraces aligning efforts with other like-minded leaders and organizations," said MDA President and CEO Steven M. Derks. "Our strength is in the ability to share knowledge and rally resources for impact. By working with respected and capable sister organizations like FARA, we are able to hone in on real progress for FA. We are committed to saving and improving the lives of people with neuromuscular disease, and we can't do it alone."
FA is a debilitating, life-shortening, degenerative neuromuscular disorder that mainly affects the nervous system and the heart. Its major symptoms include muscle weakness and ataxia, a loss of balance and coordination. Its effect on the heart ranges from mild, nonsymptomatic abnormalities to life-threatening problems in the heart's musculature. About one in 50,000 people in the United States have FA, and most individuals have onset of symptoms of FA between the ages of 5 and 18 years.
"We are excited to launch this partnership with MDA and work together toward our joint mission of developing a cure for FA by raising funds for research, promoting public awareness, and aligning scientists, patients, clinicians, government agencies, pharmaceutical companies and other organizations," said Ronald J. Bartek, Director and Co-Founder of FARA. "We know that, with FARA and MDA working closely together, we will accomplish our shared goals and get treatments to FA patients much sooner."
This partnership will work to enhance the quality, quantity and scope of FA research; bolster the scientific review process; and increase collaboration among investigators. In launching the partnership, MDA and FARA plan to co-fund research and training grants, collaborate on infrastructure initiatives, coordinate regarding advocacy efforts and work together on active communications for FA families.
The Muscular Dystrophy Association is the world's leading nonprofit health agency dedicated to saving and improving the lives of people with muscle disease, including muscular dystrophy, amyotrophic lateral sclerosis (ALS) and other neuromuscular diseases. It does so by funding worldwide research to find treatments and cures; by providing comprehensive health care services and support to MDA families nationwide; and by rallying communities to fight back through advocacy, fundraising and local engagement.
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The Friedreich's Ataxia Research Alliance (FARA) is a national, public, 501(c)(3), non-profit, tax-exempt organization dedicated to curing Friedreich's Ataxia (FA) through research. FARA grants and activities provide support for basic and translational FA research, pharmaceutical/ biotech drug development, clinical trials, and scientific conferences. FARA also serves as a catalyst, between the public and scientific community, to create worldwide exchanges of information that drive medical advances. Visit FARA at www.curefa.org
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