My road trip to finding a community with Duchenne
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Matthew Busch stops by the Jett Foundation table at a recent PPMD conference. (Photos courtesy of Matthew Busch)
In recognition of Muscular Dystrophy Awareness Month in September, the Muscular Dystrophy Awareness Month campaign features a series of stories highlighting the real-life experiences of people affected by muscular dystrophy, written in their own words. Follow us on Facebook, Instagram, or X for more stories like this, using the hashtag #MDAwarenessMonth, or read the full series.
I recently traveled with my family from Carrollton, Georgia, to the PPMD conference in Orlando, Florida. The drive usually takes seven hours, but our trip lasted about eight because we had to make several stops along the way to use the restroom, let my service dog stretch, and grab food. My parents drove me in our wheelchair-accessible van, which I was able to get in part thanks to the Jett Foundation.
Matthew Busch with his service dog at the PPMD Conference in Orlando, Florida.
Because I require so much medical equipment, we also had to pull a covered trailer behind us. Whenever we travel, I have to bring my Hoyer lift, a lift pad, a cough assist machine, a nebulizer, breathing treatments, heart medications, Miralax, a suction machine, a wheelchair charger, formula for my feedings, and various other medical supplies. Attending a conference like this takes an incredible amount of preparation and effort, and my mom and stepdad worked tirelessly to get us there. We were also incredibly blessed by Team Joseph, which helped cover our gas expenses.
Once we arrived, all that hard work paid off, and I had an amazing time. I had the opportunity to meet several other families and individuals living with Duchenne muscular dystrophy. I learned about upcoming treatments and even spoke directly with representatives from different drug companies to ask them questions.
One of the highlights of the trip was spending time in the Adult Advisory Board room. There, I was able to share my own story, speak about my life, and engage in meaningful conversations with my peers about mental health, navigating jobs, working, and so much more.
In addition to peer discussions, I attended presentations by doctors covering a wide range of medical topics. Getting to hang out in person with peers who truly understand my daily struggles was incredibly meaningful. It felt wonderful to finally meet the teams from Team Joseph and the Jett Foundation face-to-face to thank them for their support.
The PPMD conference was an outstanding learning experience, but it also represented something much bigger. Traveling is vital for people like me because it shows the world that we do not just stay home. We get out, we live our lives, and we belong in these spaces just like everyone else.
Seeing us traveling, attending events, and being visible helps break down barriers and changes how people view disability. Our lives are defined by our goals and our adventures, not just our medical diagnoses. I highly recommend that other families and individuals with Duchenne make the trip to attend community events like this.
