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FARAFARA Cure FA

 

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.

 

MDA and FARA Partner to Advance Treatments and Care for Friedreich's Ataxia

MDA logo       FARA logo PMS200 LRG

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.

About MDA
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.
Visit mda.org and follow us at facebook.com/MDAnational and @MDAnews. Learn more about MDA's mission by watching this video.

About FARA
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

Claire Orphan
Media Relations Manager
corphan@mdausa.org

 

 

Retrotope announces open enrollment for Friedreich's ataxia clinical trial

"FARA has been working with Retrotope for the past few years as RT001 has gone through pre-clinical development and we believe this provides an excellent example of the power of patient engagement early in the drug development process. FARA provided assistance in developing partnerships with academic collaborators who have tested RT001 in FA cellular models, grant support for manufacturing, attendance at regulatory meetings and engagement of the patient community in focus group discussions on diet modifications recommended for this early phase study. We are excited to continue our partnership and support as we approach this new and important milestone," said Jennifer Farmer, MS, CGC, Executive Director at FARA.

Two of FARA's Collaborative Clinical Research Network sites, the University of South Florida and the University of California Los Angeles, will be conducting the study and FARA will utilize the Patient Registry to assist the sites in recruitment. The University of South Florida is open for enrollment, the University of California Los Angeles will be opening in the early fall for enrollment.

Click here for the USF study recruitment notice.

Read more: Retrotope announces open enrollment for Friedreich's ataxia clinical trial

 

REGISTRATION OPEN!- Children's Hospital of Philadelphia Eighth Annual Friedreich's ataxia Symposium

The Friedreich’s Ataxia Center of Excellence at The Children’s Hospital of Philadelphia is pleased to present this one-day symposium providing patients and families with up-to-date clinical information on therapeutic approaches and current research being conducted in the field of Friedreich’s ataxia.


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US House of Representatives Pass 21st Century Cures

by Ron Bartek, FARA President

The House of Representatives passage of the 21st Century Cures bill showed how our elected officials can work across party lines in an attempt to improve our nation’s health.  The House Energy and Commerce Committee led a bipartisan effort over a year’s time to listen to patients and patient advocates, the bio-pharmaceutical industry and government agencies looking for ways to accelerate treatments and cures.  The bill passed the House by a vote of 344-77 – remarkable in these highly politicized times. 
 
Now, the giant next step is to see what kind of bill the Senate develops.  If the Senate product and the final 21st Century Cures Act is close to the House bill, the most lasting benefit for the FA community is likely to stem from the significant increases in the NIH budget and the smaller increase in the FDA budget – about $8.75 billion for the NIH and $550 million for the FDA.  FARA worked hard over the past year with our colleagues at organizations such as the National Organization for Rare Disorders, the Alliance for a Stronger FDA, and Research!America, and directly with congressional offices, in support of the 21st Century Cures bill, especially its provisions to increase the NIH and FDA budgets and one particular provision that would advantage drug companies that develop and gain FDA approval for therapies for rare diseases such as FA.
 
Now, the next task begins with encouraging the Senate to develop a 21st Century Cures bill that contains the same beneficial provisions as those just passed in the House.  FARA will continue to work with all our allies in this important cause and, at key points, we will be turning to the FA family to encourage you to communicate with your elected representatives for support of this effort.  As always, you -- the FA family -- are FARA and are at the heart of all we accomplish together.

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