The Ataxian: An award-winning documentary of one man’s fight against a life threatening disease

"The Ataxian" is a truly inspiring film. Tell us a little about the genesis of the film project.

ZACK: Kevin and I have known each other since we were in Kindergarten and were both interested in making movies at a young age. We both moved to LA around the same time to pursue our careers in the film industry. There came a point where we decided that we wanted to pursue stories that really touched us and were worth the effort it takes to make a film. Right about that time Kevin got a call from his brother about a guy named Kyle who was doing this incredible race and had this rare disease. Kevin and I were roommates at the time and he came in after the call and showed me this video of Kyle on the internet that blew our minds. There was no question about it, we had to tell Kyle's story. It didn't hurt that Kyle was born and raised in the same area Kevin and I were . As far as the genesis is concerned I'd say we were working towards our goals, specifically addressing the kinds of stories we wanted to tell and it all came together.

KEVIN: I was introduced to Kyle and the journey he was about to undertake by a good family friend. I went on YouTube and watched the first video of Kyle that came up and immediately had chills. Kyle's charisma and unyielding determination leapt off the screen. I had the feeling that here-in-one was both a movie star and a real life hero who was facing the challenges in his own life with humor and grace despite the odds, and providing a much needed beacon of light to the rest of the Friedrich's Ataxia community. I went to Zack and he was instantly onboard with the idea, it was really clear to both of us that this was what we had to do. Incidentally, that first clip ended up becoming the opening shot of the movie.

Has the film brought attention to the neuromuscular disease Friedreich's ataxia (FA)?

ZACK: FA has been a disease that has had very little attention given to it for the sheer fact that it is so rare. Not only is this film shining a light on the disease, but at each screening we've had so far, the response has been overwhelmingly positive and the public has been very curious about the disease. We've even had some people offer donations right on the spot after screenings have ended so we're very happy about that. Most importantly to us, the FA community is extremely excited about the film offering a glimpse into what their struggle is.

KEVIN: Our goal was always to make the themes of the film as relatable as possible to everyone, regardless of the challenges they might be facing in their own lives. I'm very pleased to see it being received that way and for the attention a universal story of hope can bring to a specific disorder such as FA.

Aside from normal production issues. Did you overcome any obstacles while completing the film?

ZACK: Production for this film is, to date, the most difficult thing that I've had the opportunity to work on. This movie demanded more personal growth and sacrifice than any project or personal endeavor I've engaged in. Frankly, the obstacles are too many to mention here, but what we really took out of it was every time we were looking failure straight in the face, we'd look over to how Kyle was behaving in his circumstance and realized we had no choice but to keep pushing forward. Kyle's perspective and his choice in how he's reacted to his situation has informed our own behaviors. On a personal level that has stuck with me and carried over in everything else I've done. I'd say the experience permanently altered who I am and therefore who I will become. I am incredibly grateful to have had the opportunity to know Kyle and help tell his story.

KEVIN: Haha. There's not enough time to adequately describe all the obstacles we encountered making the film. The most concise thing I can say is that there were a tremendous amount of serendipitous moments that allowed us to finish the film, and many times I've had the thought that something greater than ourselves willed it to happen.

The film introduces us to the Race Across America or as it's known to many, "toughest bike race in the world." Explain to the readers how much of a challenge this race actually is to those who wish to compete.

ZACK: The Race Across America is astonishingly difficult. 50% of healthy riders drop out of the race due to exhaustion and or medical issues. We're talking about people who are fit, young and healthy. For Kyle and Sean to have taken on and completed this challenge is absolutely mind boggling. One major aspect of Friedrich's ataxia is that it's an energy deprivation disease. We're talking about riding 350-500 miles per day on average. That's without stopping. The beauty of what they did lies in the example they set to anyone who has a challenge in their life and that those challenges can be overcome and addressed with nothing more than a good attitude and a healthy mind.

KEVIN: It depends whether you want to go solo or as a team. As far as what I saw along the race, I would describe a four person team competing as requiring an incredible feat of willpower and physical endurance from everyone involved. As for doing it solo, I would think you have to be nothing less than totally insane and endurance cycling should essentially be your whole life.

The soundtrack of "The Ataxian" has received acclaim as well. How did Bon Iver, Sigur Ros and Belle Brigade become part of the project?

ZACK: For Kevin and I, music is the foundation, heartbeat, and soul of any project. It is incredibly important to both of us. In the early stages of post-production I told the team to focus on telling the story correctly and to use what we felt was the best material for the project. It was my thought at the time that if we didn't hold ourselves back and limit ourselves from the onset that we would have the best opportunity to make a good movie and therefore a better impact. Having followed that strategy we showed the movie to an incredible music supervisor by the name of Sean Fernald. He committed to the project off of its merits and quality because frankly we couldn't afford him. He told me recently that when he had initially watched the movie he wasn't sure we'd be able to get most of the bands we had in there but due to his hard work and the good nature of the project we were able to reign in every song on our list.

KEVIN: It's still amazing to me the emotional impact, subtext, pacing, etc. the right piece of music can lend to a scene, and I'm so happy that the soundtrack is being well received. Music is a huge part of my life and several of the songs in the film were chosen (maybe a little too idealistically in my mind at least) before we even started filming. But I'm incredibly grateful to our wonderful music supervisor Sean Fernald for pulling through with the rights to most of our choices and to all the fantastic bands who agreed to be a part of the project.

What piece of advice would you give to documentary filmmakers making their first film?

ZACK: If I had advice for anyone working on their first documentary I would tell them to hold onto that first bit of inspiration that hit them when they saw whatever it was that convinced them to make a movie. It'll be a guiding light through what is sure to be an exciting and tumultuous experience. It informed everything we did once we were in post production and helped us stay on topic and kept our pacing up. Also surround yourself with good people. Filmmaking is a team sport and you

can't do it alone. Trust those around you and weigh their input with your own experience to make decisions. Also give yourself time. When you've got something you like shelve it for a while and come back to it.

KEVIN: Know that you have the right story and the right characters. Planning goes a long way but you also never know what you might miss so sometimes you have to act with a certain level of spontaneity. For example one of our most poignant interviews came out of a last minute decision to sit everyone down at two in the morning the night before the Race Across America in a shabby hotel room under a single 60w light bulb and a black t-shirt taped to the wall as a backdrop.

What projects are you working on and what can we expect to see from you in the near future?
ZACK: Kevin and I are currently exploring a number of different projects, one of which includes a documentary about a young boy who's family and friends were gunned down by the LRA, became on olympic athlete, and has returned home to Uganda to make a difference in his community and those who are struggling within it. It's a story about love, forgiveness, character, and choice.

KEVIN: I'm excited about several upcoming narrative and documentary projects but the one that I'm currently the most invested in came out of a recent trip I was involved in to Northern Uganda where we spent a lot of time with a former abductee of the Lord's Resistance Army who went on to compete in the Olympics for Uganda.