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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.

 

Fourth-grader's family, friends take up fight against her genetic disorder

Wearing their "Hope for To-Morrow" shirts heralding an Oct. 11 fundraising event to raise money to fund research for Friedreich's Ataxia Research Alliance, Sydney McCloskey and Anna Morrow, both of Anneslie, pose for a picture. Anna, 9, has been diagnosed with Friedreich's Ataxia. (Brian Krista / Baltimore Sun Media Group)

Anna Morrow is an athletic fourth-grader at Stoneleigh Elementary School, where she plays field hockey and lacrosse. The 9-year-old also likes to ride her bike; and her parents signed her up for horseback riding lessons at the Graham Equestrian Center after reading a recent story about it in the Towson Times.

Read the entire article HERE

Emotional Homecoming Crowning Brings Awareness

Congratulations to Kyle Waterman, crowned Homecoming King at Linn-Mar High School in Marion, IA. Kyle is also currently enrolled in a clinical trial for Friedreich's ataxia and used his homecoming crown to spread awareness. With so many working together, research continues to move forward! KCRG ABC 9 shared Kyle's story.

Read the full article HERE.

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."

Read the entire article HERE

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 rideataxia.org/plusct.
 
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: http://www.ustream.tv/channel/curefa on Sept. 17 at 6 p.m. EST. A Ustream account/membership is not needed to join.

For more information, please visit http://www.curefa.org/energyball, 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. www.health.usf.edu

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

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

Media contact:
Felicia DeRosa
FARA Program Director
(484) 879 6160
info@cureFA.org

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