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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.

 

What it’s like to be a teenager whose body is ground zero for a life-saving medical discovery

When I first meet Josh Wooten at a deli in Gainesville, Florida, he flashes a big smile at me, squinching up his eyes. He looks like any other hopeful young man making the transition to college, from his faded graphic t-shirt to his scuffed tennis shoes. But he is seated next to a large, black walker.

“Friedreich’s Ataxia is like being drunk all the time except without the fun,” says Josh, who is 19 years old. “You are tired all the time and constantly feel off balance.”
FA affects roughly one in every 50,000 people in the US. But there are hundreds of millions more around the world with rare degenerative illnesses that affect the nervous system like Parkinson’s, Huntington’s, Lou Gehrig’s disease, and Pompe disease.

Read the full article HERE
 

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
 

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