‘The Ataxian’ Documentary Can Be a Powerful Educational Tool

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by Sean Baumstark |

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I have several friends I’m still actively connected with today who have known me for years. Some knew me when I worked in church ministry, while others knew me as a gas station attendant. A few have been in my life since college, while most I’ve met within the last 12 years at my current job.

Some of them know I’ve wanted to be an actor for a long time, and most know I did improv comedy for several years. Some have even seen me perform.

Unfortunately, a handful of them have discovered an embarrassing old IMDb credit of mine for an ultra-low-budget short film I was in a long time ago. These friends went on to secure hard copies of the DVDs, and to this day, they find ways to remind me of what they possess.

The old adage is fitting in this case: Friends — can’t live with them, can’t live without them.

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Of course, most people I meet, whether they become friends or remain acquaintances, know about Friedreich’s ataxia (FA) to some degree. Although they might not be able to pronounce the disease or even recall the specific diagnosis or underlying condition, most everyone knows I have a disability.

I don’t shy away from talking about it, and since I occasionally use a walker, it’s hard to hide or ignore. Over the years, as my involvement with the rare disease community has strengthened, as my advocacy efforts have developed, and as the podcast I co-host has grown, I’ve long had tools and resources available to help educate friends and strangers about FA.

Over the past few weeks, though, an old resource is gaining new traction.

In 2010, I joined three friends as we pedaled our bicycles across the United States, competing in Race Across America. This crazy adventure was documented by a small film crew, which believed it could create a beautiful story centered around monumental challenges, a team’s tenacity, the human pursuit of accomplishment and triumph — all while weaving through the devastation and heartaches associated with FA.

The Ataxian” documentary was originally released in 2015. The crew tagged along on our cross-country journey and had multiple cameras running at any given time. Since the race was nonstop, the cameras seemed nonstop as well. The film crew amassed hundreds of hours of film, and they were tasked with finding the “perfect” story to showcase as a finished, feature-length documentary.

I think they nailed it.

I’ve watched that film probably 20 times, and I had the privilege of attending many film festivals with the producers in support and promotion of it. For me, 12 years after the race and seven years since the film premiered, I assume everyone I know has seen it or knows about it.

I’ve learned recently that my assumption isn’t accurate. I’ve received several messages from people I’ve been acquainted with for years who apparently didn’t know I ride bikes, didn’t know how serious FA is, and certainly didn’t know I was a subject in a documentary.

This documentary was presented on YouTube not long ago, and in honor of Rare Disease Day 2022, supporters built a social campaign around the film in efforts to raise awareness and educate viewers about FA. With the popularity of YouTube and the easy, free, on-demand access to “The Ataxian,” members of the entire FA community now have a powerful resource to share with anybody they’d like.

Friendships grow deeper when people understand each other and what they are up against in life. Perhaps “The Ataxian” will help friends, doctors, scientists, researchers, and many others understand the devastation of FA and the urgency to find a cure.

Personally, I also hope it further drowns out my only other IMDb credit.

You’re invited to attend a virtual Q&A with me and other members of the cast and crew of “The Ataxian” on Thursday, March 3. Register here.


Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.

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