Rare Disease Day

Sean Baumstark and Kyle Bryant

Hosts of Two Disabled Dudes Podcast

Sean and Kyle are both affected by a rare disease called Friedreich’s ataxia (FA). FA affects their balance and coordination, significantly limiting their physical abilities.

However, both dudes have completed several long-distance bike rides including “The World’s Toughest Bike Race” – Race Across America (RAAM). Their RAAM journey is the subject of an award-winning documentary called The Ataxian.

Kyle rode his trike to the top of the highest paved road in North America and Sean ran with the Olympic Torch.

Together Sean and Kyle host the podcast series, Two Disabled Dudes. Their guests include leaders in the Rare Disease community, Paralympic athletes, notable Psychologists and accomplished public speakers and authors. This podcast is about setting sights beyond the challenges in life and dreaming big, making a plan, and then executing like mad. You are guaranteed an emotional rollercoaster and practical thoughts that apply to many areas of life with this podcast.

Colin Werth

Colin is a lifelong resident of Farmville, Virginia, and has a degree in IT from Southside Virginia Community College. He works as an IT Specialist for Letterpress Communications. In addition to his work in the IT and marketing field, Colin is a patient advocate for the rare disease community. He was diagnosed with Duchenne Muscular Dystrophy at age 3 in 1998. Colin became involved with patient advocacy organization Parent Project Muscular Dystrophy in 2016 by joining their Adult Advisory Committee (PAAC) to help guide Duchenne-related programs as an individual living with the disease. Colin currently serves as the president of the PAAC. He has worked with multiple pharmaceutical companies to integrate the perspective of the adult community in their drug development process. Colin is a passionate patient advocate and strives to educate others about Duchenne and the science behind the disease. He is also a regular attendee of Jett Foundation’s Camp Promise in addition to being a proud supporter of Jett Foundation.

Kris Napper

Kris is a 37-year-old graphic designer/illustrator who runs his own clothing business. As the middle child between his two siblings, Kris’ spinal muscular atrophy (SMA) diagnosis was less of a surprise, as his older sister had previously received the same diagnosis. In his free time, Kris enjoys watching his favorite Seattle sports teams, going to concerts and comedy shows, and playing with his service dog, Jazz! Kris’ perpetual pursuit of adventure and new experiences has taken him to 5 countries and 16 states, and recently drove him to jump out of an airplane! Convinced that he is invincible, Kris has no plans to stop thrill-seeking any time soon!

Race Martinez

Race Martinez is 19; he lives with Duchenne muscular dystrophy (DMD). He also has a twin brother, Ried,  who also has DMD. He likes to play video games, go to the movies, and travel in his free time. In recent years, he has finished high school by taking his GED. He is currently in his second semester of college majoring in architecture. One day he hopes to design accessible homes and hotels. He also recently learned how to drive using adaptive hand controls. He has begun the process of ordering a vehicle so that he can take the state driving test and drive himself.

Chris Schlechty

Hailing from Kirkland, WA, a short drive from Seattle, Chris works at Microsoft as a software engineer developing the user interface of SharePoint and OneDrive. He was hired after an internship at the company and graduated from the University of Washington with a degree in computer science. Chris lives with a rare disease: Limb-girdle muscular dystrophy. Chris first became involved with Jett Foundation as a participant in Camp Promise, Jett’s summer and year-round camp programming for individuals living with Duchenne and other neuromuscular disorders, like Limb-girdle. Chris also serves on Jett Foundation’s Board of Directors, using his personal experience living with muscular dystrophy to help guide program development, particularly for the 18+ community.

Amanda Becker

Amanda Becker is parent to two adult children, a 21-year-old daughter, and 19-year-old son with Duchenne muscular dystrophy.  She lives in Newburyport, MA, and has been active in the Duchenne community since Jack’s early diagnosis at the age of 1.  Amanda has been a passionate advocate for cardiac care and research in Duchenne and has a new interest in advocating for more post-high school options for young people with DMD.  Amanda serves on the Boards of the Hope for Gus Foundation, the JB’s Keys Foundation, and serves as a Coordinator and Advocate for the New England region for Parent Project Muscular Dystrophy.  Amanda has supported Jett Foundation as a longtime Gal on the Gals for Cal triathlon team.

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