ONCE UPON A GENE - EPISODE 045 - Two Disabled Dudes - Kyle Bryant and Sean Baumstark
When I became a part of the rare disease community after Ford was born, I didn't feel like I had any community at all. After Ford was born, I felt less connected to my friends and I sought out a new community through podcasts because hearing stories made me feel connected. Sean Baumstark and Kyle Bryant, the hosts of Two Disabled Dudes podcast, both have Friedreich’s ataxia (FA). They have been an impactful resource in my journey and I'm so excited they're joining me.
EPISODE HIGHLIGHTS
Can you tell us how you became friends and connected as podcasters?
We met through cycling, raising awareness and did a couple bike rides together, including The World’s Toughest Bike Race - Race Across America (RAAM). It starts in San Diego, California and ends in Annapolis, Maryland. A documentary crew followed us and that experience really brought us together.
What is Friedreich’s ataxia (FA)?
Friedreich’s ataxia (FA) is a rare neuromuscular disease that affects muscle coordination from the toes to the fingertips. It also has symptoms of scoliosis, diabetes, vision loss, hearing loss and life-shortening heart complications. It's a rare disease that affects about 1 in 50,000 people. The condition is dual recessive so both parents can carry the damaged gene, but there's no warning indicators that it will affect the children. The average diagnosis age is 5-15 years old.
Can you share the background of The Ataxian?
The film is our race against time in the Race Across America. It's relay style and we had 4 cyclists. The team has 9 days to get from the west to the east coast with no time to stop. We used this race as an opportunity to call attention to FA and raise awareness about life in the rare disease world. Everyone on the team had one mission- to finish before the clock stopped.
Sean, tell us about your organization, Determinence.
After being diagnosed, I started doing day hikes with friends to think, talk and wrestle with the new outcomes we thought life was going to bring. It was on one of these hikes that we realized a lot of other people in my community at that time were inspired because they knew I didn;t walk well and struggled with hiking and climbing. People were inspired to get out, which turned into a 5K, then a 10K and eventually a half marathon. This idea of helping people accomplish something physically challenging for them was the driving inspiration behind Determinence. Determinence is a non profit I founded with a mission to help people in the world of disability to climb mountains and cross finish lines. Supporters can donate to the cause or get involved with a team.
Kyle, tell us about your book, Shifting Into High Gear.
All of my cycling adventures are documented through blog posts, articles and the documentary. My first ride from San Diego, California to Memphis, Tennessee wasn't documented anywhere so I worked with a writer to publish the book, Shifting Into High Gear. It was an amazing process, thinking about my experience, what it meant to me and what it may mean to someone else who reads my story.
LINKS AND RESOURCES MENTIONED
The World’s Toughest Bike Race - Race Across America (RAAM)
TUNE INTO THE ONCE UPON A GENE PODCAST
CONNECT WITH EFFIE PARKS