FARA - News & Press Releases

'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.

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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.

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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.

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Race for Matt and Grace golf tournament gets assist from Johnston Firefighters

SUPER SPECIAL SUPPORTERS: John Jasparro (front left) accepts a framed flag from the first-ever Matt and Grace Golf Tournament from JHS Athletic Hall of Famer Matt DiIorio during Tuesday’s moving meeting at JFD Headquarters on Atwood Avenue. Taking part in the presentation was, from left: David Iannuccilli, Jon Pistacchio, Sally and Jack DiIorio, Richard Boehm, Dave Pingitore, Keith Calci and John Graham. (Sun Rise photos by Pete Fontaine)

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11th Annual Friedreich’s Ataxia Symposium - Registration Open!

The Friedreich’s Ataxia Center of Excellence at Children’s Hospital of Philadelphia is pleased to present this one-day symposium providing patients and families with up-to-date clinical information on therapeutic approaches and current research being conducted in the field of Friedreich’s ataxia.
Click Here for Registration Instructions.

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News & Press Releases