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FARAFARA Cure FA

THE ATAXIAN Kicks Off Rare Disease Week on Capitol Hill

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.

 

 

About Rare Disease Legislative Advocates (RDLA)
Rare Disease Legislative Advocates is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. www.rareadvocates.org

 

About Friedreich’s Ataxia Research Alliance (FARA)

The Friedreich's Ataxia Research Alliance (FARA) is a 501(c)(3), non-profit, charitable organization dedicated to accelerating research leading to treatments and a cure for Friedreich's ataxia. www.CureFA.org.

 

About the Two Disabled Dudes
Kyle Bryant and Sean Baumstark, the subjects of the feature length documentary film The Ataxian, also have a Bi-weekly podcast about living life beyond Circumstances, called the Two Disabled Dudes Podcast.  Episodes and info at:  twodisableddudes.com.

 

Social Media Links

FARA on Facebook
FARA on Twitter
FARA on Instagram
The Ataxian on Facebook
Two Disabled Dudes on Facebook

Media Contacts: 

Felicia DeRosa,
FARA Program Director

(484) 879 6160
info@curefa.org

 

About the Author

Felicia DeRosa

Felicia DeRosa

Fundraising & Communications Program Director

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