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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.

 

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

US Open stars embrace chance to give back through charity work

NEW YORK — Celebrity typically comes with a privileged existence. It also delivers power, which could be used to do good deeds throughout the world.

As global stars, many tennis players embrace the responsibility of charitable involvement and work to raise money for a variety of causes. Almost every top player you can think of — Serena Williams, Rafael Nadal, Roger Federer, Novak Djokovic, Sloane Stephens, and many others —- have foundations stamped with their names in front.

For the most part, players tend to show a preference toward charitable endeavors to help socio-economically disadvantaged children, and often combine the focus of education and sport.

Read more HERE

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News & Press Archives