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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.


North Branford siblings speak-out about growing-up with devastating disabilities


NORTH BRANFORD, Conn. (WTNH) - A North Branford mom, and her two kids, are raising awareness about what it's like to grow-up with a disability. Both Sam and Alex Bode have Friedreich's Ataxia which causes progressive damage to the nervous system.

"For eight years - 7 years and 10 months, they were just like everybody else," said Mary Caruso, explaining that her two children were active, riding bikes and playing with friends. "I started noticing subtle things like going through a doorway was difficult... walking straight was difficult. Sam’s gait was starting to go off."

Read more HERE

Football team makes classmate's wish come true


ST. GEORGE (News4Utah) - A young girl with a debilitating disease has inspired high school students in southern Utah to give back.

This is the reaction of the student body at Pine View High School as their classmate Liberty is wheeled out: a standing ovation.

"You just make everyone light up when they meet you," said Brooks Maile, football player and newly-elected student body president.

Read more HERE

Howell High School's Senior Survivor Raises Record-Breaking Amount

Howell HS Group Photo

Howell High School’s Senior Survivor raised a record breaking amount this year to support two charities.

Following a busy week of fundraising, competitions and 14 students living in their school, Howell High School’s Senior Survivor fundraiser has raised $88,127. Katelin Bensman was named the winner of Senior Survivor for outraising all of the other survivors. The money raised will be split between two non-profit organizations, the Friedreich's Ataxia Research Alliance (FARA) and LACASA. FARA is special to the senior class as one of their classmates is affected by the rare disease which causes nervous system damage and movement problems.

Read more HERE

Lend Us Some Muscle! 2018

In honor of Friedreich's Ataxia Awareness Day, the Friedreich's Ataxia Research Alliance (FARA US) is joining the Friedreich's Ataxia Research Association's (fara-australia) LEND US SOME MUSCLE (LUSM) Campaign. Join us . . . let's lend some muscle together to raise awareness and funds to support ground breaking research and #CUREFA.


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Life Is About How We React - Rare Disease Day - February 28th

Join FARA for a social campaign to raise awareness for Rare Disease Day!

Rare diseases affect more than 350 million people worldwide. Rare Disease Day is a global awareness effort to draw attention to all rare disease.

This year, FARA is launching a social media campaign with the theme- Life is about how we react, taken from the documentary film, The Ataxian, which has been selected to kick off the Rare Disease Week activities in Washington DC. FARA invites you to join this social campaign to show the world how you react to rare disease.

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