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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.

Make it a FARA Weekend in Philly!

On May 7th, ride with rideATAXIA Director Kyle Bryant and others cycling with Team FARA in The Penn Medicine Orphan Disease Center's Million Dollar Bike Ride.

The next morning, head north of the city to beautiful Bucks County to support the Logan FAmily at the 4th Annual 5K Race for Christina! The event, held in honor of FARA Ambassador Christina Logan, has raised over $30,000 for FARA over the past four years!

Tod Leiweke Honored as Lightning Community Hero

Thank you to Tod Leiweke, current NFL COO and former Tampa Bay Lightning CEO, for sharing his Lightning Community Hero award with FARA. As chair of the FARA Energy Ball for 5 years with his wife Tara, Tod and the Lightning organization have been incredible supporters of FA research advancement and dear friends. Click here to learn more about Tod's Lightning Community Hero award.

Read the entire article HERE

Anna's Army Movie Star Masquerade Ball was held Saturday night

The stars came out for a masquerade ball in Vienna to benefit a special woman, and a special cause. Hundreds attended Anna's Army Movie Star Masquerade, on Saturday, and dressed up as Hollywood characters, and actors.

The Guest of Honor, Anna Gordon, suffers from Friedreich's Ataxia, a disease that targets the immune, and nervous system. The money raised at the event goes towards the disease's Research Alliance.

Melissa Gordon, the mother of Anna Gordon, said, "The outpouring of this community is just overwhelming. That's what brings me to my knees."

Read the article and see video HERE

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

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