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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.


NORD Issues Statement Applauding the Approval of Ensuring Access to Clinical Trials Act

National Organization for Rare Disorders, Inc. (NORD) Issues Statement Applauding the Approval of Ensuring Access to Clinical Trials Act. FARA was one of the organizations advocating with NORD for this important legislation.

"The legislation has enabled those with rare diseases to receive compensation up to $2,000 for participating in clinical trials without having this compensation be counted as income when calculating eligibility for Supplemental Security Income (SSI) and Medicaid."


Sigma Phi Epsilon Raising Awareness and Research Dollars

FARA is excited to be working with the brothers of Sigma Phi Epsilon at Quinnipiac University in Hamden, Connecticut, and veteran fundraisers Sam and Alex Bode, and FARA founding board member Mary Caruso on rideATAXIA+ CT.
This 10 mile bike ride fundraiser is in honor of Joey Mullaney, a member of Sigma Phi Epsilon at Quinnipiac, and Sam and Alex Bode.
The brothers have been getting a lot of attention lately because of a video they made about helping Joey to the top of a peak near campus:


rideATAXIA+ CT will take place on  October 11, 2015.  For details about the event please visit
About rideATAXIA+
rideATAXIA+ seeks to empower local communities to organize neighborhood bike rides to raise funds for FARA's mission to treat and cure FA through research. In the spirit of rideATAXIA, these grassroots rides include participants of all abilities with route distances of 10 miles or less on a bike trail or low traffic neighborhood roads. Each ride is followed by a gathering to celebrate the camaraderie that drives us toward the ultimate finish line - treatments and a cure.


USF Health and FARA to host Sept. 17 scientific symposium

TAMPA, Fla., Sept. 14, 2015 /PRNewswire-USNewswire/ -- The University of South Florida (USF) will bring together leading researchers and patients searching for a treatment for Friedreich's ataxia and related disorders at the seventh annual scientific symposium "Understanding Energy for A Cure." The symposium will be held 5 to 8:30 p.m., Thursday, Sept. 17,at the USF Marshall Student Center Ballroom, USF Cedar Circle, Tampa, FL 33620.

The symposium will be hosted by Dr. Judy Genshaft, President of USF, and Clifton Gooch, MD, professor and chair of the Department of Neurology in the USF Health Morsani College of Medicine. Theresa Zesiewicz, MD, professor of neurology and director of the USF Ataxia Research Center, will update attendees on the Friedreich's ataxia initiatives at USF, one of 10 sites in the international FARA Collaborative Clinical Research Network.

Featured speaker Sanjay Bidichandani, MBBS, PhD, professor of pediatrics and biochemistry and molecular biology at the University of Oklahoma College of Medicine and member of the FARA Board of Directors, will talk about the pipeline of investigational treatments for Friedreich's ataxia. He was part of the group that discovered the gene for Friedreich's ataxia and, over the last 15 years, his research has helped characterize the disease's genetic and epigenetic defect.

For the first time, the symposium will include a panel discussion with several biotechnology and pharmaceutical industry leaders about new clinical trials testing drugs and gene therapy for Friedreich's ataxia. The panelists include representatives from Agilis Biotherapeutics, LLC; Horizon Pharma, plc; Reata Pharmaceuticals Inc; and Retrotope, Inc. The companies collaborate with FARA and academic institutions to focus on research that will improve the quality and length of life for those diagnosed with Friedreich's ataxia and lead to treatments that eliminate symptoms.

To watch the presentations in real-time, visit: on Sept. 17 at 6 p.m. EST. A Ustream account/membership is not needed to join.

For more information, please visit, or call (813) 974-5909.

– About USF Health –

USF Health's mission is to envision and implement the future of health. It is the partnership of the USF Health Morsani College of Medicine, the College of Nursing, the College of Public Health, the College of Pharmacy, the School of Physical Therapy and Rehabilitation Sciences, and the USF Physicians Group. USF Health is an integral part of the University of South Florida, a high-impact, global research university dedicated to student success.

– About The Friedreich's Ataxia Research Alliance (FARA) –

FARA is a non-profit organization dedicated to curing FA through research.

Media contact:
Felicia DeRosa
FARA Program Director
(484) 879 6160

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


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 and follow us at 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

Claire Orphan
Media Relations Manager



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


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