February 28th, 2025 – In a world that wasn’t designed to meet the needs of those who require accessibility, Jett Foundation strives to share unique ideas and experiences of those living with a rare disease in order to have honest and impactful conversations and assist many in our community. One of the primary ways Jett Foundation does this throughout the year is through awareness day events, such as Rare Disease Day.
During Jett Foundation’s 2025 Rare Disease Day event, we heard from six panelists, all members of the rare disease community, on their adaptive experiences, sharing how to be limitless with our interests. The panel discussion was moderated by Sean Baumstark and Kyle Bryant of the Two Disabled Dudes podcast. Sean and Kyle both live with Friedreich’s ataxia and push to thrive in all aspects of life.
The Two Disabled Dudes share, “It was an honor to have this opportunity with Jett Foundation for a fourth year in a row. The rare disease and Jett Foundation community is one that we have fallen in love with. There are just so many topics and conversations to share, so we are incredibly grateful to be a part of some of them.”
Panel speakers included César Ibañez, living with Spinal Muscular Atrophy; Eloise Pillarella, living with Spinal Muscular Atrophy; Yuva Gambhir, living with Duchenne muscular dystrophy; Caeden Parisi, living with Duchenne muscular dystrophy; Andrew Chauppetta, living with Duchenne muscular dystrophy; and Troy Chauppetta, living with Duchenne muscular dystrophy.
Yuva is 23 years old studying cognitive science at the University of Pennsylvania. In his spare time, he is the heartbeat of the dance floor as a DJ or running the table during chess matches. He shares, “I really enjoy when the crowd turns toward me or I get song requests because it means people are paying attention and the moment is coming together. DJing allows me to cultivate a happy and connected energy.”
This year’s panelists all strive to take accessible experiences to a new level. To transcend the limitations of his wheelchair, César immerses himself in scientific and adventurous opportunities, studying biology one day and learning to scuba dive the next. Identical twins Andrew and Troy have climbed their way to the highest ranks of wheelchair soccer, representing the United States with pride that they are inspiring others. Recent high school graduate Caeden has dove straight into the Building Information Modeling field while serving as a player and board member of the US Volt Hockey Association.
Eloise works as a high school biology teacher and loves to draw, read, explore accessible trails, and visit museums. During Rare Disease Day, she shared: “One of my summer bucket list items is to explore a bigger hike in a hiking wheelchair as opposed to my daily wheelchair. I have also kayaked on a river but would love to do it on a lake… adaptive sports are a great way for me to have unique experiences while living with a rare disease.”
Community members who registered to tune in to the Zoom panel discussion received a Photo Journal of Experiences to help capture life’s greatest moments or ideas. We can’t wait to see how the community uses this journal to document all the ways they are living out their dreams, without limits.
Jett Foundation’s Director of Programs, Alexa Tinsley, says, “We have an immense amount of gratitude for both our panelists and everyone who tuned in to Jett Foundation’s Rare Disease Day event this year. Time and time again, our community shows up to not only gain personal knowledge but to share what they learned to improve the lives of others. Without dedicated community members, experienced speakers, and generous sponsors, these important conversations would not have the great reach that they do.”
A recording of the 2025 panel discussion can be found on our event webpage.
Once again, we express a giant thanks to all who connected with us during RDD in 2025, including our generous sponsors:
