On February 28, 2022, Jett Foundation hosted a virtual event to celebrate Rare Disease Day 2022. This was Jett Foundation’s 5th annual Rare Disease Day, which welcomed speakers from the Duchenne and rare disease communities in a panel discussion themed “Thriving with Duchenne.”
Moderating the event was Kyle Bryant and Sean Baumstark, the hosts of Two Disabled Dudes podcast. Kyle and Sean are both adults living with a rare disease called Friedreich’s ataxia (FA). FA affects their balance and coordination, limiting their physical abilities. However, both Kyle and Sean have accomplished significant feats. The two “dudes” take on tremendous bike rides, physical adventures, inciteful guests on their podcast, and aiding the rare disease community however they can. Jett Foundation is very grateful for their presence at Rare Disease Day.
Also speaking at the event was Elijah Stacey, Anthony DeVergillo, Leslie Crowley, and Guðjón R. Óskarsson, all who are men living with Duchenne muscular dystrophy. Elijah, 20, is an entrepreneur, public speaker, and author. “When I was 15 years old I founded Destroy Duchenne, a nonprofit organization that aims toward advancing gene therapy into human practice, which began my whole entrepreneur journey,” says Elijah. Elijah authored the book “A Small If,” which can be found here.
Anthony, 29, feels he has come a long way since first being diagnosed with Duchenne: “From a young age, I always had trouble being social, fitting into social groups, or trying to hang out with my friends. Now, I am an optimistic and outgoing person and I have found other ways to be social and get involved through the virtual world and technology.”
Leslie Crowley, 28, doesn’t let Duchenne stop him from pursuing his passions either. Leslie runs an online music production company, which occupies most of his time. “Initially when I started my music, I was doing it for fun. Music was one of the only things that I wanted to do, and I could do it by myself, which is why I chose to produce,” says Leslie.
Guðjón, 31, lives in Iceland and recently completed his Doctorate of Philosophy in Genetics. He has served as a pharmacologist and looks forward to working in genetic research. “Earning degrees has always been the next goal in my life. What drives me is that we are all in this [life] together, and I need to find ways to make it worth it,” says Guðjón.
Over 200 people from across the nation joined the panel discussion and even more participated on social media, sharing our infographics leading up to Rare Disease Day. A contest was also released on Rare Disease Day by Jett Foundation, testing the community on how many people worldwide are living with a rare disease. Congratulations to our winner, Jillian Moore, who will receive an Amazon gift card!
If you missed the event, a recording of the live event can be watched on YouTube.
The team at Jett Foundation would like to extend our gratitude to all of our sponsors for supporting this event and making our Rare Disease Day 2022 celebration possible. Please join us in thanking Antisense Therapeutics, Avidity Biosciences, Casimir, Dyne Therapeutics, Edgewise Therapeutics, Entrada Therapeutics, FibroGen, Italfarmaco, NS Pharma, PepGen, Pfizer, RegenXBio, Sarepta Therapeutics, Solid Biosciences, Stealth Biotherapeutics, and Ultragenyx Pharmaceutical.
