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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.

 

Joe Brown, 28, inspired his Carolina classmates, loved the Tar Heels and never gave up

Joe Brown Joe Brown pressed a button, and slowly, his remote-control wheelchair began to raise his six-foot-four-inch frame to a standing position. As the motor whirred, a crowd of 1,000-plus was silent.

Brown loved his chair, and he especially enjoyed that feature. Living with Friedreich’s Ataxia, a rare and debilitating disease that progressively damages the nervous system, he wasn’t able to extend all of his lanky frame. That is, until he got the chair. Now, he could even see eye-to-eye with his father, Larry.

This process took about 60 seconds, but this was no ordinary minute. What he once dismissed as an impossible dream had come true. The public address system in the Dean E. Smith Center had just blared Brown’s full name. He was on the right side of the stage, preparing to graduate from UNC Chapel Hill’s prestigious Kenan-Flagler Business School.

When Brown decided that he was upright enough, he used a joystick to move himself across the stage. That’s when he realized that the whole crowd was now standing with him.

Brown - a 2016 UNC-Chapel Hill graduate, rabid Tar Heels and Carolina Panthers fan and aspiring sports businessman - passed away last month at the age of 28. For the many who knew him, his friendship left an indelible mark.

Read the entire article HERE

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

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