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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.

FARA receives 2016 NORD Rare Impact Award

FARA President- Ron Bartek, Board Chair- Paul Avery and Spokesperson- Kyle Bryant accepting the Abbey S. Meyer's Leadership Award at the National Organization for Rare Disorders, Inc. (NORD) Rare Impact Awards gala last night from NORD Board Chair Dr. Marshall Summar and President/ CEO Peter Saltonstall.

“A rising tide will lift ALL our boats,” says Ronald Bartek, President and Co-Founder of FARA. Through partnerships with NORD and other NORD membership organizations, the Alliance for a Stronger FDA and Research!America, FARA advocates to advance and accelerate therapy development for all diseases. For two consecutive years, FARA staff and volunteers have led state house events across the country for Rare Disease Day®. Their engagement helped make Pennsylvania’s event one of the largest, and has led to the establishment of a new Rare Disease Caucus.

Thank you to NORD for this great honor and to our FA community for making a real impact on rare disorders.
· About the NORD Rare Impact Award
· May 17th Presentation Text



“Life is like riding a bicycle. To keep your balance, you must keep moving forward.” Albert Einstein

May 7, 2016 Cumming, GA - Candy Stacks does not claim to be Einstein, but this mother of two from Cumming, Georgia knows what it takes to keep moving forward however many hurdles life puts in your way.

On Sunday, May 15th Candy will join a group of roughly 100 men, women and children at a cycling event called rideATAXIA to raise awareness and funding for a rare disease called Friedreich’s Ataxia (FA). FA is a devastating neurodegenerative disease for which there is currently no treatment or cure. Candy and her husband, Jason, have two children – both diagnosed with FA.

View the entire article HERE

TRAIN - Innovator Spotlight on the Friedreich's Ataxia Research Alliance

Q: Friedreich's Ataxia Research Alliance (FARA) very early on launched a natural history study of the disease. Can you describe the scope and purpose of it?

FARA and clinical researchers established the Collaborative Clinical Research Network (CCRN) in Friedreich's ataxia in about 2004, with the initial goal of developing clinical endpoints for Friedreich’s ataxia (FA). At that point, no industry-sponsored clinical trials had been carried out in FA, and FARA recognized that the community would need established clinical endpoints and clinical research infrastructure in order to be able to advance therapeutic development. These early studies to evaluate clinical outcome measures and disease-specific rating scales became the basis for an ongoing natural history study that has collected data on over 850 patients. Today the goals of the CCRN include:

View the entire article HERE

Arizona woman to swim across state lakes for rare disease research

PHOENIX (KPHO/KTVK) - An Arizona woman is swimming across four state lakes to raise money for research to find a cure for a rare disease that two of her brothers have. Kristin Jones is participating in the SCAR Swim. Participants swim from dam to dam through Saguaro Lake, Canyon Lake, Apache Lake and Roosevelt Lake. Jones and dozens of others from around the world started on Wednesday, and the event runs through Saturday.

She is raising awareness and money for the Friedreich's Ataxia Research Alliance. It's a nonprofit that is researching a way to treat and cure Friedreich’s ataxia (FA), which is a debilitating, life-shortening, degenerative neuro-muscular disorder.

View the video and article HERE

Make it a FARA Weekend in Philly!

On May 7th, ride with rideATAXIA Director Kyle Bryant and others cycling with Team FARA in The Penn Medicine Orphan Disease Center's Million Dollar Bike Ride.

The next morning, head north of the city to beautiful Bucks County to support the Logan FAmily at the 4th Annual 5K Race for Christina! The event, held in honor of FARA Ambassador Christina Logan, has raised over $30,000 for FARA over the past four years!

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