Each February, Jett Foundation’s community comes together to recognize Rare Disease Day. This is a time to elevate awareness, share lived experiences, and advocate for meaningful change. This year, our efforts culminated in a powerful virtual panel discussion on February 19, held in honor of Rare Disease Day and centered on the theme: Advocating for Care Needs in Duchenne & Beyond.
Throughout February, Jett Foundation amplified the voices of individuals and families impacted by Duchenne muscular dystrophy and other rare diseases. From social media campaigns to community storytelling, the messaging remained the same: increase understanding, foster connection, and drive advocacy for equitable care.
Rare diseases impact an estimated 300 million people worldwide, with many individuals facing barriers to diagnosis, treatment, and support. For the Duchenne community, these challenges are especially urgent, reinforcing the importance of awareness initiatives like Rare Disease Day.
Moderated by Sean Baumstark and Kyle Bryant, hosts of the Two Disabled Dudes Podcast, the February 19 panel brought together a diverse group of speakers living with Duchenne and other neuromuscular conditions.
Panelists included Ashley Fox, Charley Seckler, Xavier Carrasco, and Jake Marrazzo, each sharing personal insights on navigating healthcare, pursuing passions, and advocating for their needs.
Together, they offered an honest and inspiring look at life with a rare disease, emphasizing both the challenges and the possibilities that come with adaptive living.
- Self-Advocacy is Essential
- Panelists highlighted the importance of speaking up within healthcare systems and beyond. As Ashley Fox shared, “You are your own best advocate. No one understands your needs better than you do. And finding a team who is behind you at all times, advocating for your needs, is very helpful.”
- Living Beyond the Diagnosis
- A recurring message throughout the discussion was the importance of identity beyond a diagnosis. As expressed during the panel, “Don’t let your diagnosis define your limits – define them yourself.” – Jake Marrazzo
This sentiment echoed the broader Rare Disease Day theme of empowerment and possibility, encouraging individuals to pursue education, careers, and passions on their own terms.
- Community Creates Strength
- From peer support to organizations like Jett Foundation, panelists emphasized the power of connection. “Finding people who understand your journey changes everything,” Charley Seckler noted, reinforcing the importance of community-driven spaces.
- More Than a Job
- “Once I graduate college, I am looking forward to working so I can contribute toward society and feel part of something bigger,” shared Xavier Carrasco, who is looking to make a big splash in the mechanical engineering and materials science world.
While Rare Disease Day is a moment in time, the conversations it sparks extend far beyond February. Jett Foundation remains committed to providing resources, programming, and advocacy opportunities that empower individuals and families year-round.
Events like the February 19 panel are a reminder that lived experience is one of the most powerful tools for change: driving awareness, shaping policy, and building a more inclusive future for the rare disease community.
If you missed the live discussion or want to revisit these powerful stories and insights, we invite you to watch the full recording by clicking here.
A special thank you is owed to the generous 21 Rare Disease Day sponsors, whose support helped Jett Foundation host this event and initiate awareness efforts this February. We couldn’t do this without you!
