The Highest Road
A Documentary Film
Kyle Bryant, a man with an incurable genetic disease, which placed him permanently in a wheelchair, rides his recumbent trike up the highest paved road in the world at 19,300 feet; along the way, he reveals the curative powers of community.
Overview
The film begins amid the western reaches of the Himalayan Mountain range.
On June 29th, 2024, at 8 am, a six-member team of cyclists departed from their base camp in Leh (a luxury hotel, not a tent) and began their ascent up the highest paved road in the world.
Six days and 200 miles later -- after traversing through the far northern Indian region of Ladakh – a long disputed (and desolate) geographic boundary between China and India -- they aim toward the peak of Umling La Road at 19,300 feet.
The journey begins from the perspective of Kyle Bryant, diagnosed at the age of 17 with Friedreich’s ataxia, a rare neurological disease, which placed him in a wheelchair by the age of 31.
A Path Out of Isolation
After riding his recumbent tricycle across the United States on two separate occasions, Kyle discovers his passion on three wheels. As he points his trike up Umling la Road, Kyle’s journey tells a unique story about disease, one that views adversity through a different lens. “Any feat you accomplish doesn’t have to be about “overcoming” adversity,” he says, “Instead, it’s about sidestepping adversity and weighing how you can embrace the people around you.”
While the “Highest Road” begins its journey in isolation and despair – from the first visions of a shortened life span and no cure in sight – the heart of the narrative charts Kyle’s arrival amid a community of individuals facing a life-threatening rare disease, patients, parents, doctors, advocates, researchers and dreamers, who share a singular purpose: To thrive.
And to find a cure.
"Do we have a cure or not? That's the fundamental question. We all have a need for a finite answer. But maybe this binary thinking is not functional. Maybe the response is more nuanced. There are so many variables to consider, like riding a bike up a mountain. That's one aspect of the answer."
Kyle Bryant
Scope of Film
The Highest Road illustrates the impact of a life-altering diagnosis and sudden entry into a world, where familiar landmarks disappear and a sense of disabling powerlessness ensues.
“Getting a diagnosis that your son or daughter has an incurable disease launches a person into the twilight zone. You feel lonely and isolated in a world where no one expects to be.”
Dr. Al Friedman (who lost his son at 26.)
Highlights the curative powers of community, and its capacity to affect measurable change: The path to a cure doesn't strictly happen in a lab, but in the incremental steps of a community driven toward a singular goal.
"People underestimate their impact upon a treatment or a cure, but if you can find your contribution (and get involved), then you have everyone focused on a singular goal from your unique sphere of influence. In the FA community, that's a powerful concept."
Kyle Bryant
Illustrates how building a global community – especially in the small pockets of rare disease – energizes grassroots organizing, strengthens relationships between clinical outreach and expands local communities.
“When you’re first diagnosed, you lose all feeling of value. You feel worthless, but when you become part of a community, you suddenly feel enormous self-worth.”
Kyle Bryant
Defines the critical relationship between the patient community and science, and, in the case of FA, clinical trials by Reata Pharmaceuticals, which led to the development of the first FDA approved treatment.
“Transformational change happens at the intersection between people and science.”
Friedreich's Ataxia Research Alliance
Characters
Kyle Bryant
Kyle is Founder and Director of rideATAXIA for the Friedreich’s Ataxia Research Alliance (FARA) and serves as FARA’s spokesperson. rideATAXIA is currently held annually in 4 locations and has raised over $11 million for Friedreich's ataxia (FA) research since 2007. Despite his diagnosis of FA at the age of 17, Kyle has completed numerous long-distance bike rides including "The World's Toughest Bike Race", Race Across America in 2010, as part of 4-man Team FARA which is the subject of the documentary The Ataxian. He is co-host of the Two Disabled Dudes Podcast. Kyle's memoir, released in 2019 - Shifting Into High Gear chronicles his first ride across the country when he was coming to grips with his rare disease diagnosis.
Sean Baumstark
Sean Baumstark lives with Friedreich’s ataxia and embodies the mantra "get stuff done." Sean ran his first 10k three weeks after being diagnosed in 2007. He believes excuses hold us back from being our best. He is the founder of Determinence, a nonprofit helping disabled individuals experience the beauty and power of physical achievement. He is a subject in the documentary film, The Ataxian, which chronicles a 4-man team competing in Race Across America (RAAM). He co-hosts the weekly podcast, Two Disabled Dudes, which encourages listeners to "live beyond circumstances." He lives and works in Sacramento, CA.
Colin Meyer, MD
While Chief Medical Officer and Chief Research and Development Officer at Reata Pharmaceuticals, he led development of Skyclarys, the first and only approved treatment for Friedreich’s ataxia. He strives to educate rare disease communities about how people, doctors and scientists can think about disease and collaborate to move towards treatments and a cure.
Jen Farmer
Jennifer Farmer is the Chief Executive Officer of the Friedreich's Ataxia Research Alliance. With a Master's degree in genetic counseling, Jennifer developed a special interest in neurogenetic conditions and then went on to establish and coordinate clinical and research programs for individuals and families diagnosed with Friedreich Ataxia (FA) and other neurodegenerative diseases. Having established relationships with the families who founded FARA and sharing in their vision to treat and cure FA she joined the organization full time in 2006.
Production Team
Filmmaker: Allan Thompson
Allan is an award-winning director, director of photography and editor based in Dallas, TX. With experience producing films for Fortune 100 companies and filming in 15 countries around the world, Allan is comfortable working in any environment to bring stories to life. In the nonprofit sector, Allan’s work has inspired millions of dollars in fundraising and grants. Allan is also a Part107 licensed and insured drone pilot. Allan’s unique eye blends the best of documentary and narrative styles to beautifully capture authentic moments and evoke genuine emotion.
Writer: Alex Schnitzler
As a writing consultant, writer, and editor, Alex collaborates with professionals to leverage their professional lives into narratives that lead to published books, blogs, websites, articles and dreams. For over ten years, Alex served as editorial director of Keller Media, a nonfiction literary agency. Ten years ago, he formed Syntax Editorial, where doctors, CEOs, NBA athletes, musicians, lawyers, Silicon Valley executives, former mobsters, psychics, and incarcerated senators have all contributed to his client roll. Kyle’s relationship with Alex began in 2017, when he hired Alex to write a book about his experiences with Friedreich’s ataxia, which led to the publication of Shifting to High Gear in 2019.
Producer: Kyle Bryant
Somehow, whatever Kyle sets out to accomplish, he gets it done. His capacity to network, plan, budget, and organize projects to their successful completion is profound. So... sure, he says. Let's plan a bike ride up the highest paved road in the world and make a film about it.
We’re striving to produce a documentary film that not only tells the story of Friedreich’s ataxia, but also the incredible path to the first FDA approved treatment, Skyclarys.
We hope to document a rare disease community committed to a singular goal:
Finding a cure.