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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.


Wasco Students Take Steps For A Cure

Students in Wasco laced up their walking shoes Thursday morning to help those who can't.

ABC23's North County reporter Crystal Figueroa spoke with students who are taking steps against a muscular disorder that stops people in their tracks. It's called Friedreichs Ataxia, a degenerative neuro-muscular disorder that affects one in every 50,000 people in America, but students at Karl Clemmens Elementary don't get that technical. All they know is that this disorder stops people from physically doing what they love.

Jared Laird was just 13 years old when his mom noticed something wasn't right. Jared began to lose coordination when he played sports and would lose his balance when he changed clothes. Soon, Laird couldn't play basketball or any other sport he loved.Health officials said there is no cure and no treatment for this genetic disorder.Laird is now 22 years old and said the only thing he can do to make it better is physical therapy.

Thursday, students at Karl Clemmens Elementary kicked off a walk-a-thon to raise money for a cure.

Read More: Wasco Students Take Steps For A Cure

$360,000 in Kyle Bryant Translational Research Awards Announced Today

The National Ataxia Foundation (NAF) and the Friedreich's Ataxia Research Alliance (FARA) announced today that, this year, they are co-funding two $120,000 Kyle Bryant Awards that are going to promising translational research in Friedreich’s Ataxia (FA). A third award will be funded by FARA for $120,000, made possible by sponsorship from Outback Steakhouse. One award is being made to Dr. Mark Payne of Indiana University School of Medicine, proposal titled “Optimizing delivery of frataxin using cell penetrant peptides”. The second award goes to Dr. Gino Cortopassi of the University of California Davis, proposal titled “Screening for mitofunctional Friedreich's Ataxia therapeutics”. The third will be granted to Dr. Marek Napierala from the University of Texas, MD Anderson Cancer Center, proposal titled “Crosstalk between microRNAs and iron metabolism in pathogenesis of Friedreich’s ataxia”.

Read More: $360,000 in Kyle Bryant Translational Research Awards Announced Today

Stars glow in Branford for Friedreich's event

BRANFORD -- It wasn't quite the Tribeca Film Festival, Tony Awards or the Oscars, but a group of stars converged quietly at the Owenego Inn recently to receive a lesser-known, but personally important honor: the first Friends and Allies Award from the Friedreich's Ataxia Research Alliance.

The connection that brought acclaimed actress Mary Stuart Masterson, her husband, actor Jeremy Davidson (who appears in the TV series "Army Wives") and screenwriter and actor Jayce Bartok to Branford is two sisters who are Southern Connecticut State University students and have Friedreich's ataxia, a progressive neuromuscular disease.

The sisters, Sam Bode, 22, and Alex Bode, 19, formed a close friendship with the stars after they met with Masterson to tell her what it is like to live with the rare disorder. Masterson wanted the everyday information for what would become the critically acclaimed, award-winning independent film "The Cake Eaters," in which Masterson makes her cinematic directorial debut.

Read More: Stars glow in Branford for Friedreich's event

FARA’s First Friends & Allies Award Presented to th e Executive & Creative Team of The Cake Eaters

The Friedreich’s Ataxia Researc h Alliance (FARA) presented their first Friends & Allies Award to the executive and c reative team of the award winning film, The Cake Eaters on September 11, 2009 in Branford, CT. Mary Stuart Masterson, (Director/ Producer), Jayce Bartok (Screenplay writ er), Jesse Scolaro (Producer), and Carol & Patrick Morris (Executive Producers) accept ed the award on behalf of The Cake Eaters team at the Bode/ Caruso Family’s Find A Cure Dinner/ Auction fundraiser event.

The values of FARA’s Friends and Allies award are rooted in what it means to be a good friend to our fellow person- treating one another with respect, dignity, and kindness. The Cake Eaters team modeled that kind of friendship to the Friedreich’s ataxia community and FARA’s mission by attending fundraising events, lending their names to the cause and personally making in kind and monetary contributions to the organization.

The team has also notably demonstrated their friend ship with their film The Cake Eaters, released earlier this year, which featured a main character with Friedreich’s ataxia- Georgia played by Kristen Stewart. The story was t old with a sensitivity that made people pay attention to a character with a rare neuromuscular disorder and care about her struggle. In this film, art served as a powerful medium for storytelling and raising awareness- a unique awareness of Friedreich’s ataxi a that FARA could not have generated on its own.

Read More: FARA’s First Friends & Allies Award Presented to th e Executive & Creative Team of The Cake Eaters

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