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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.

Park High School graduate profile: Diagnosis altered Mekayla Holm's plans

Mekayla Holm had a plan.
She would finish her career at Park High School, go to college and move on to medical school to become a pulmonologist. Then a medical diagnosis changed the plan and her approach to life. Holm’s been dancing 12 years, but in her freshman year her parents and others noticed she was developing stability problems. There was concern about her spine during a March 2015 physical, and her pediatrician referred her to a specialty clinic. From there she was sent to Shriners Hospitals for Children. Doctors suspected Holm’s symptoms were due to something more than scoliosis.
After hearing doctors discuss Friedreich’s ataxia as a possible diagnosis, she said she returned to school and started researching the disease.
“I was in the bathroom crying because I didn’t know what to expect,” she said. “I was very scared because I’ve always had a plan.”

Read the entire article HERE

St. Catherine’s Academy raises money to fight Friedreich’s Ataxia, heart disease

St. Catherine’s Academy participated in a dual fundraiser by running and jumping at the chance to fight Friedreich’s Ataxia disease and heart disease on Thursday, May 12, 2016. The event gathered 160 cadets in grades transitional kindergarten to 8th grade to help raise awareness and important funds for these critical diseases. The cadets also participated in Hands-Only CPR demonstrations and learned the importance of staying healthy for weeks leading up to the event.

For the past 16 years, SCA has hosted the annual Jog-A-Thon which has raised donations for research and programs of the Friedreich’s Ataxia Research Alliance. Friedreich’s Ataxia (FA) is a debilitating, life-shortening, and degenerative neuro-muscular disorder which affects 1 in 50,000 people in the United States. SCA Cadets run yearly in honor of Chelsea Lane, who acquired FA at the young age of 5. Tragically, Chelsea lost her battle to this terrible disease at the age of 19.

Read the entire article HERE

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

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