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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.


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

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)

Read more HERE

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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FARA and the Burrows Hill Foundation Announce the Recipients of the 2018 Ataxian Athlete Initiative (AAI)

AAIDOWNINGTOWN, PA-- The Friedreich's Ataxia Research Alliance (FARA) in partnership with the Burrows Hill Foundation (burrows-hill.org) have partnered once again to distribute adaptive cycling equipment through Ataxian Athlete Initiative (AAI). The AAI is a unique program serving people with ataxia who have demonstrated a strong desire to stay healthy and fit despite their progressive disabilities. 

Friedreich's ataxia (FA) is a rare disease that affects balance and coordination and has symptoms such as vision and hearing loss and often results in life-shortening heart complications.

This year, the AAI was sponsored by Catrike, UVA Sun Systems, The Texas Irish Foundation and The Burrows Hill Foundation. The Burrows Hill Foundation generously provided over 80% of the funding for the 2018 AAI.

Invite and They Just Might Come!

The FA community rocks when it comes to fundraising to support research. The rideAtaxia program, Energy Ball and grassroots community events have made it possible for several clinical trials to be currently underway. Those amazing fundraising efforts also offer another incredible benefit, the opportunity to build relationships with elected officials throughout the country.

Elected officials are there to support their constituents. If you have a question about a government program, need help resolving a problem with a public agency, or would like to voice your opinion on legislation, your representative wants to hear from you. But, they also have a real interest in getting to know the community they serve as well as the constituents within it. So, if invited, they just might come!

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