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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.

 

12th Annual Friedreich's Ataxia Symposium at CHOP

Save The Date
12th Annual
Friedreich's Ataxia Symposium

Monday, Oct. 14, 2019



Download the PDF HERE

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

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

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