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FARAFARA Cure FA

The Ataxian in Athens

Private Screenings of The Ataxian 
Athens, Georgia | May 2016

Ataxian Atlanta1

It was a FARA-packed weekend, with the Emory University FA patient symposium the day before and the first rideATAXIA Atlanta hours earlier. It surely felt like every effort was leading up to this. I drove an hour and a half east of Atlanta to Athens, Georgia with my husband and a friend who also has FA. I grabbed a Kleenex from the car and shoved it into my purse, just in case. 

 

I had wanted to see this documentary since before filming began! I first heard of it while attending the Van Schoick Benefit Bash in Athens, Georgia, a fundraiser for FARA. The bash was held just prior to the planned 4-man team FARA would sponsor for the Race Across America (RAAM). Two of the riders, Kyle Bryant and Sean Baumstark, have FA. The Ataxian follows this team cycling over a 9-day (and night!) trek in pursuit of raising awareness. The chaos met when sleep is scarce and physical limits are pushed is set in juxtaposition to the stillness of FAmilies waiting and hoping. The documentary reminded me this disease is scary; that finding a cure is no small feat.

Ataxian Atlanta2There is something about slow motion overlaid with the post-rock sounds of Sigur Rós. It’s like a calming presence with promise on the horizon. The cinematography is incredible. The Ataxian is a high quality documentary that's easily one of the best documentaries I've seen. The film lays out each piece of this disease building up emotion as we head to the finish line. Kyle shows us that a disability does not mean weakness. His recumbent trike is a visual reminder that anything is possible. Every pedal stroke, whether through the dessert, up a mountain, or in the rain, gets this team closer to what we are all searching for. Kyle gives us hope.

Kyle Bryant led a question & answer session after the film, where I learned about Sean Baumstark's love for Taco Bell. But I just can't remember anything else discussed. My mind was focused on the lump in my throat and how I was going to pull it together for the reception that was to follow. I hesitate to write your typical film review because I have Friedreich’s ataxia, because I know every FAmily member followed in this documentary, because I know what it feels like to need hope. My one Kleenex was just shy of the whole box that I actually needed. But in all honesty, The Ataxian is beautiful and empowering. We can fight this. We will cure this.

For updates, please LIKE The Ataxian documentary on Facebook

All of my love and gratitude to the Van Schoick family who planned these two private screenings for May 15th and May 16th, to coincide with the symposium and the rideATAXIA Atlanta fundraiser. They invited members of the FA community and attendees from their Benefit Bash who had helped raise an additional $17,000 to run FARA’s team at RAAM (photo below with a few of us at the bash). Two of the Van Schoick daughters, Robbi and Becca, were diagnosed with FA. On May 21st, Becca passed away after a lifelong battle with Friedreich’s ataxia. Our hearts are with the Van Schoick family during this very difficult time. Thank you for all your family has done for our FAmilies and for the strength it has inspired; our sincerest condolences. 

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May 21, 2016 was also FA Awareness Day.

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About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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