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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.


NORD Announces 2016 Rare Impact Award Recipients to be Honored on May 17

Continuing its annual tradition of recognizing the people, organizations, advocates and companies who are making a difference in the fight against rare diseases, the National Organization for Rare Disorders (NORD)® announces the 2016 Rare Impact Award recipients to be honored on May 17.

In its inaugural year, the Rare Impact Awards continues NORD’s 30-year tradition of bringing the entire rare disease community together to celebrate those who are making extraordinary contributions to help others.

Read the entire article HERE

BWW Review: THE ATAXIAN, Powerful and Inspiring : The Life Well Lived Is The Life Well Raced

In the rear view mirror of life, we may encounter individuals who surpass our expectations of human will and endurance and inspire us with their selflessness and courage. Consider THE ATAXIAN that rear view mirror and Kyle Bryant that epic hero. The documentary, directed by Kevin Schlanser and Zack Bennett, one of the feature films at this year's Sedona International Film Festival, is a deeply inspiring chronicle of Kyle's courageous journey to increase awareness about Friedreich's ataxia (FA), a degenerative disease that usually begins in childhood and leads to impaired muscle coordination and other debilitating conditions.

Diagnosed with FA, Kyle chooses not to surrender but to face his life's new reality head-on. His determination to overcome his limitations effectively removes the dis from disability. He does not surrender to the promise of mortality; he promises instead to grab the immediacy of life and do something huge while he still has the ability.

Read the entire article HERE

The Ataxian movie shows at the Sedona Film Festival

PHOENIX (3TV) - The Ataxian is a documentary film that follows Kyle Brant (who is afflicted with Freidreich's Ataxia, a neuromuscular disease) and his team of bikers who raise money for the cause while riding in the hardest bike race in the world, the Race Across America . Screening at the Sedona Film Festival on Sunday 2/21 and Tuesday 2/23

Read the entire article HERE

Saratoga County families highlighted in Rare Disease Movie Night

Dylan McDonnell discusses Friedreich's Ataxia , a debilitating, degenerative, neuromuscular disorder that has left him in a wheelchair, on Friday, Feb. 12, 2016,during an interview at his home in Ganesvoort, N.Y. less Dylan McDonnell discusses Friedreich's Ataxia , a debilitating, degenerative, neuromuscular disorder that has left him in a wheelchair, on Friday, Feb. 12, 2016,during an interview at his home...

Read the entire article HERE

2015 FARA grassroots events raise over $1 Million for FA research!

At the beginning of 2015, FARA issued a $1 Million fundraising challenge to our FAmily of grassroots fundraisers, a campaign called Mission 1 Million. We are excited to report that thanks to your generous volunteer efforts organizing over 60 grassroots events to benefit FARA, the Grassroots Program has exceeded $1 Million in fundraising again this year!

The support we have received from dedicated team members like you has led to new drug discoveries filling a rich research pipeline with diverse approaches to treatment and new partners. This past year alone, three new clinical trials were launched and FARA also started a collaborative biomarker initiative to find ways to better measure the potential effectiveness of a therapy in a shorter period of time.

The grassroots fundraising program has always played a significant part in FARA's ability to fund research. When you reach your individual event goals, TOGETHER we draw closer to our program goal of $1 Million and as a result keep up an urgent pace to research. Let's use this excitement and momentum to continue research progress into 2016!

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News & Press Archives