On February 29, 2024, Jett Foundation hosted our seventh annual Thriving with Duchenne Rare Disease Day event. This year, we recognized Rare Disease Day with a panel discussion highlighting members of the Duchenne muscular dystrophy community who are living life to the fullest, fulfilling their dreams, and conquering goals.
Returning to moderate the event were the hosts of the Two Disabled Dudes podcast, Kyle Bryant and Sean Baumstark, who are affected by a rare disease called Friedreich’s ataxia. Despite their rare disease diagnosis, Kyle and Sean have completed several long-distance bike rides, host a podcast together, and continue to raise awareness across the rare disease community.
Our panelists from the Duchenne community, Colin Werth, Kris Napper, Race Martinez, Amanda Becker, and Chris Schlechty, shared perspectives on tackling everything from daily goals to their largest dreams. From obtaining a driver’s license to graduating college to skydiving out of an airplane, our panelists shared what motivates them to live to the fullest despite a rare disease diagnosis.
Race Martinez, a college student living with Duchenne, shared about barriers to starting adaptive driving: “At first, there were certainly emotional barriers. I also never knew until recently that there were joysticks [for driving]. It took years, but my family and I finally found where to be evaluated and take the tests I needed. Now, I am very close to driving on my own.”
Amanda Becker, a parent to an individual living with Duchenne, spoke about her family’s experience when college approached for her son, Jack, who lives with Duchenne: “Eight years ago, we did not think college was a possibility for Jack. As a Duchenne parent, you don’t know what tomorrow, one year, or five years may bring. Jack’s transition through high school was very challenging, and searching for a college experience was a dive into the unknown. We tell ourselves that we are going to figure it out, one way or another.”
A recording of the day’s panel discussion can be viewed on Jett Foundation’s website.
Individuals and families from the rare disease community also submitted videos leading into the event on how they are living to the fullest and accomplishing goals. We encourage you to take a look at these videos on our Facebook page!
We look forward to connecting with the community across many events throughout 2024 and at next year’s Thriving with Duchenne Rare Disease Day event. Stay tuned on our website for upcoming Jett Foundation events, programs, and awareness days.
Jett Foundation is very thankful to our sponsors, partners, and supporters for allowing us to expand our reach and drive positive impact through awareness days such as Rare Disease Day, each year. Specifically, thank you to this year’s Rare Disease Day sponsors:
