2017 Rare Disease Movie Night

Award Winning Documentary to Headline PEP’s Rare Disease Day at the Movies

SARATOGA SPRINGS, NY – The Ataxian, an acclaimed documentary about Kyle Bryant, who has a rare, progressive neuromuscular disease called Friedreich’s ataxia (FA), demonstrates with awe-inspiring clarity that “life is about how we react.” Kyle’s remarkable participation in the Race Across America, a grueling bicycle race, sparks hope in families battling FA and engages them in a movement, known as rideATAXIA. The Ataxian, produced by Redwood Creek Entertainment, provides an astonishing display of Kyle’s unbreakable spirit in the face of life-threatening and daunting circumstances.

“From the moment I met Kyle, who attended our first annual movie night last year, I knew he was an amazing person, not to mention a tour de force in terms of what he has accomplished,” explains Dan Bobear, president and founder of the Patient Experience Project, a marketing and communications agency that is hosting the rare disease movie night. “When I watched the first 30 seconds of The Ataxian trailer I knew that we had to bring this movie to the Capital Region.”

The Rare Disease Movie Night aims to raise awareness about rare diseases. Capital Region families impacted by various rare diseases will be in attendance. The charity event will be held at Bowtie Criterion Cinemas, 19 Railroad Place in downtown Saratoga Springs beginning at 7:00 pm. The program will include brief remarks followed by a screening of The Ataxian.

Tickets are being reserved for a suggested $15 donation, with 100% of proceeds benefiting the Friedreich’s Ataxia Research Alliance (FARA), a nonprofit organization dedicated to finding treatments and a cure for FA through research and advocacy.

Tickets are limited and will be available on a first come, first served basis HERE. Get your tickets today to help find a cure for FA, and be inspired by this powerful documentary!

“I have been overwhelmed by the response to this film,” says Kyle Bryant about The Ataxian. “I am really moved to see the upstate New York community, and so many others around the world, rallying for the FA cause and rare diseases in general.”

The Ataxian has left audiences cheering and is the recipient of the following honors: Dances With Films—Audience Award for Best Documentary; Sedona International Film Festival—Audience Award for Best Documentary; Newport Beach Film Festival—Audience Award for Best Documentary; and Nevada City Film Festival—Heart of Gold, Festival Director’s Award.

About Rare Disease Day
2017 marks the tenth year that the international rare disease community celebrates Rare Disease Day by coming together in a show of solidarity to raise awareness of rare diseases. The Awareness Day, which is recognized on the last day of February each year, is on Tuesday, February 28, 2017. Patient organizations, lawmakers, medical professionals, researchers, patients and families take part in commemorating the day in various ways around the world. Some of the goals are to help bring patients and families of rare disease out of the isolation that they often feel; to raise funds to support scientific research for treatments and a cure; and to advocate for policymakers to recognize rare diseases as a public health priority.

About the Friedreich’s Ataxia Research Alliance (FARA)
FARA is a national, public 501(c)(3) organization dedicated to the pursuit of scientific research leading to treatments and a cure for Friedreich’s ataxia (FA). FARA’s mission is to marshal and focus the resources and relationships needed to cure FA by raising funds for research, promoting public awareness, and aligning scientists, patients, clinicians, government agencies, pharmaceutical companies and other organizations dedicated to curing FA and related diseases.

About the Patient Experience Project
The Patient Experience Project (PEP) is a full-service, patient-centric communications firm serving the healthcare, pharmaceutical and biotech industries. PEP’s nationally recognized approach centers around the collaboration of the foremost disease experts—patients themselves—to co-create authentic programs and content for patients, caregivers, and healthcare professionals.