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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.

 

Cycle to raise awareness of incurable condition

A NORTHSIDE man, who has an incurable condition, will attempt to raise awareness of the disorder through a major fundraising cycle this weekend.

In January 2013, Barry Rice (35), from Ayrfield, was diagnosed with Friedreich’s Ataxia (FA), a neuromuscular disorder that causes progressive damage to the nervous system resulting in the loss of muscle control.

This Saturday, June 18, in Ashbourne, Barry is holding his third annual Cycle Ataxia event and is hoping approximately 800 cyclists will take part following the successes of 2014 and 2015.

Read the full article HERE
 

Ataxia Research Center at USF is looking for volunteers

The Ataxia Research Center at the University of South Florida is looking for volunteers, ages 7 and up, to participate in part of a research project, “Longitudinal change of gait and balance in Friedreich ataxia.” Volunteers for this project must have genetic diagnosis of FA and be ambulatory with or without an assistive device. The purpose of this project is to examine whether walking patterns and balance assessments are able to assess how people are affected with Friedreich ataxia.

For more information or if you are interested in participating please contact the coordinator at 813-974-5909 or email jshaw@health.usf.edu or taranca@health.usf.edu
Thank you for your consideration of this important project.

Ashley Sturm - "My last story here at WTAP may be the most important I've ever told."

Ashley Sturm of WTAP says goodbye - and honors Anna Gordon and "Anna's Army".

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"I couldn’t just sit and wait for a cure": How this man is raising funds to research his rare condition

BARRY RICE was diagnosed with Friedreich’s ataxia (FA) just over three years ago. His balance and coordination had been deteriorating for years, but doctors couldn’t figure out why.

He finally found out what was wrong in January 2013. Barry (35) inherited FA from his parents, who are both carriers of the defective gene that causes the condition. They do not have the condition themselves. Barry recalled how his first daughter was just three months old when he got the diagnosis, telling us: “I was worried sick she would inherit it.”

Read the full article HERE
 

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

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