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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.
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
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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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.
FOR IMMEDIATE RELEASE
"THE ATAXIAN" Kicks Off Rare Disease Week on Capitol Hill:
DOCUMENTARY FEATURES RARE DISEASE PATIENTS’
LEGENDARY BIKE RIDE ACROSS AMERICA
- Feature-length Film with Kyle Bryant and Sean Baumstark Screened at the Naval Heritage Center on Sunday, February 25, 2018 -
Washington, DC (January 29, 2018) –.Rare Disease Legislative Advocates (RDLA) is partnering with Redwood Creek Entertainment and Executive Producer Thomas Hamilton to present a screening of “The Ataxian” (www.TheAtaxianMovie.com) a documentary film, featuring two people living with Friedreich's ataxia (FA), Kyle Bryant and Sean Baumstark, and their team’s legendary bike ride across America in just nine days. The screening will take place on Sunday, February 25, 2018, at 7pm at the Naval Heritage Center (701 Pennsylvania Avenue, NW) in Washington, DC.
How would you react to a life-debilitating and fatal illness? In “The Ataxian,” two men show the world that it is possible to take action and find hope under even the most life-threatening and daunting of circumstances. At age 17, Kyle Bryant was diagnosed with the relatively unknown progressive neuromuscular disease, FA, for which there is no medication, nor cure. As Kyle lost his ability to play his favorite sports and even walk, he began biking long distances in a specially outfitted “trike.” When he is finally relegated to a wheelchair, Kyle decides that enough is enough. He enlists the help of three friends, Sean—who also has FA—John and Mike, and they embark on the “world’s toughest bike race,” the Race Across America (RAAM).
In this feature-length documentary filmmakers and childhood friends, Kevin Schlanser and Zack Bennett, capture what is a grueling non-stop journey for anyone—much less someone with an energy-depriving affliction—that starts in Oceanside, CA, ending in Annapolis, MD. What happens along the way inspires hope in the hearts of other families battling FA and nurtures a movement, known as rideATAXIA. Set to an incredible soundtrack featuring Bon Iver, Sigur Ros, Belle Brigade and others, the audience accompanies Kyle and his relay bike team through magnificent sweeping landscapes and the unbreakable spirit of a life-changing cross-country trip that shows: life is about how we react.
The screening will be preceded by a cocktail reception at 5:30pm and followed by a panel Q&A featuring Kyle Bryant, Sean Baumstark, Executive Producer, FA parent and Friedreich;s Ataxia Research Alliance (FARA) Board Member Tom Hamilton, and FARA Research Director Dr. Angel Martin. The Q&A will be audio-recorded as an episode of the Two Disabled Dudes Podcast.
To register for the event, visit: http://action.everylifefoundation.org/p/salsa/event/common/public/?event_KEY=10426
Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.