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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.


Becoming Involved in the FA Community Was the Best Decision I’ve Made

Fighting FA by Frankie Perazzola Over the past few years, I have learned that Friedreich’s ataxia (FA) patients come to terms with their diagnoses in their own time. At first, I didn’t understand why some patients kept a distance from the FA community and the Friedreich’s Ataxia Research Alliance (FARA). I couldn’t understand other perspectives because of my immaturity, inexperience, and lack of knowledge about the illness. But meeting other patients and having in-depth conversations with them has changed my viewpoint.

I was fortunate that I accepted my diagnosis early on, but everyone’s experience is different. I soon learned to shut up and listen. Initially, my conversations were limited to Facebook Messenger and various ataxia support groups. Then I pushed myself to attend rideAtaxia events and symposia. It was the best decision I’ve made, and I am so fortunate to be part of such a special group of people.

Read the entire article HERE

7th grader with neuromuscular disorder scores first touch down with help from teammates


PASCO COUNTY, Fla. — Tuesday nights River Ridge Middle School Knights game is one Gavin Lambert will never forget.

He waited until the end of the 4th quarter for his big moment and under the bright lights he said, “It feels like an honor."

One he never expected.

"Most kids wouldn’t care, most kids would be like you’re in a wheelchair deal with that,” said Lambert.

But these aren’t "most kids” and Gavin’s mom, Dawn Lambert, knows that.

Read more HERE

River Ridge Middle School player scores touchdown


Gavin Lambert has a neuromuscular disease that affects his movements/speech. His friends made touchdown happen.

Read more HERE

'It's just frustrating': Evansville teen Sam Archuleta battling debilitating disease


EVANSVILLE, Ind. — Walking doesn’t come easy for Sam Archuleta. He’s wobbly. He trips over his own feet a lot. He struggles to move in a straight line.

Most people don’t need to think before taking a step. Sam does.

He's 15 and suffers from a debilitating, degenerative neuromuscular disorder called Friedreich’s ataxia (FA). He was diagnosed in March and is one of only 5,000 people in the United States and 15,000 worldwide who have it.

Read more HERE

The 9th Annual FARA 5K is just around the corner


It's the race for "Matt and Grace"
The ninth annual Friedreich's Ataxia Research Alliance 5-K is just around the corner.
Race for "Matt and Grace" starts at Rhode Island College this Saturday.

Read more HERE

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