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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.

 

Kyle Bryant Living Life Beyond Circumstances

Kyle Bryant was crowned king of his high school prom. Growing up in Sacramento, California, he spent his childhood going to school, snowboarding, playing baseball, and riding his bike around the neighborhood with his buddies. A smart, athletic, popular boy, Bryant’s future was bright. He knew early on that he was destined to do something great with his life.

Bryant was always a bit clumsy, but knee scrapes and elbow cuts are normal for an active kid. When his parents realized that his balance and coordination issues were getting worse as he grew, they started searching for answers. They travelled to different doctors and clinics for a year to find out what was going on with their son.

Read the entire article HERE

Bike ride along I&M Canal in Channahon raises funds for rare disease research

Julie Vallier said she was in shock as her doctor broke the news that after years of tests, her medical diagnosis was Friedreich’s ataxia — FA.

“I thought, okay, what is that? I had never heard of it. Then he said there is no treatment and no cure. I could see his lips move, but I couldn’t hear him,” Vallier said.

On July 21, Vallier was among the 300 people who traveled to Central Park in Channahon to ride one of five cycling trails as a part of the FA research fundraiser rideATAXIA Chicago. This was the eighth time that race founder Kyle Bryant held the event in Channahon.

Read the entire article HERE

From patient to Researcher

Living with rare disorder helped steer her life’s work

Shandra Trantham is a 21-year-old, first-year graduate student in the UF Genetics and Genomics Graduate Program hoping to find a cure for Friedreich’s ataxia, or FA, a rare neuromuscular disorder. But her interest in the disease started long ago.

When she was about 9 years old, Trantham began to have poor coordination and balance, which is one of the first signs that appear in children who have FA. She was diagnosed with the disorder when she was 12 years old. But instead of allowing the disease to restrict her, Trantham chose another course of action.

She decided to make FA research her life’s work.

Read the entire article HERE

12th Annual Friedreich's Ataxia Symposium at CHOP

Save The Date
12th Annual
Friedreich's Ataxia Symposium

Monday, Oct. 14, 2019



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Advocacy 101: Jump In

Here are some great opportunities to fulfill that New Year's resolution to get more involved in advocacy! 2019 is off and running with great programs happening throughout the country. Most are free and some you can even watch from the comforts of your own home!

Read more: Advocacy 101: Jump In
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News & Press Archives