MDA Ambassador Guest Blog: Spreading Awareness One T-shirt at a Time

Dwayne Wilson is 57 years old. He is originally from Southern California and lived in Spokane, WA. for 20 years until moving back home to Irvine, Ca, in 2017. Dwayne was diagnosed with late-onset Pompe disease (LOPD) on Nov 19^th, 2018, when he was 50 years old. Dwayne lives with his wife and mother-in law, they have four adult boys, the oldest passed away from a brain tumor at age 22, just 7 months before Dwayne’s diagnosis. He is a grandpa to two beautiful granddaughters, ages two and almost four. Dwayne enjoys fishing, collecting rocks, going to sporting events, attending concerts, and sitting on the beach. Dwayne is a patient speaker, a writer, and on social media. You can follow him on Instagram @smashingpompe.

The Pompe Champ is smashing pompe in his Miami Dolphins 68 jersey

If you get to know me, you will discover that I am a huge sports fan. I have a passion to cheer on my favorite teams in football, baseball, hockey and college basketball. Wherever I go, you’ll see me wearing jerseys, t-shirts, shorts, and hats all decked out in my teams’ colors. When I received my diagnosis of Pompe disease in November of 2018, I decided that it would be cool to combine my love of sports with my advocacy for Pompe disease.

At the time of my diagnosis,I had never heard of Pompe disease, and I found that many people that I encountered had not heard of it either. It is a rare inherited genetic muscle-weakness causing disease. How could I educate others about this debilitating disease? I decided that creating T-shirts would be an awesome way to spread awareness. I created designs and  instead of having my last name “Wilson” on the back of a jersey or shirt, I had the word “Pompe” custom printed onto the apparel. With each different sport, I have different sayings that I use such as “Cure Pompe”, “Pompe Champ”, and “Smash Pompe”.

Virtual AI background for a Zoom meeting as Dwayne shares his story with others

Designing clothes with the word “Pompe” to start conversations and educate others is one of my main focuses in life. It has become an ice breaker for me to open up and talk about Pompe disease and share my story. Custom jerseys or t-shirts also allow a number on the back. My first shirt had the number ”50,” which represented my age when I was diagnosed with Pompe. As I created more shirts, I used other numbers that were important to me on my journey. The number “68” for the year I was born, “17” for my birthday, and “4” with the saying “Cure 4 Pompe”.

For me, sometimes it’s hard to talk to a total stranger, let alone talk about a rare muscle disease that is eating my muscle cells away from the inside out. I have an invisible disability and sometimes people cannot see how I feel. I have had numerous occasions where a person will ask if “Pompe” is a person on that team, if my name is Pompe, or just what is it all about. I have multiple custom t shirts for the Miami Dolphins, Los Angeles Angels, Anaheim Ducks, and the Gonzaga Bulldogs. These custom jerseys and t-shirts allow me to spread awareness about my Pompe disease daily.

Team Hope for Pompe at the 2019 MDA Muscle Walk of Los Angeles where Dwayne and team were the #1 fundraisers

In addition to all of my own custom-designed sports Pompe shirts, I have also purchased t-shirts from other Pompe families who have had fundraisers to raise awareness for Pompe disease and created apparel for their events. These shirts have sayings to draw more attention to Pompe with slogans like “Not Today Pompe,” “Pompe Strong,” or “I am just here for the Muscle Juice”.  All of these have morphed into my own saying: “I am Smashing Pompe.” Being a part of the fundraisers and working with others to raise awareness is a great way to be involved in our Pompe Community.

I often wear these shirts at my infusions and even some nurses will say that they have never heard of Pompe disease. The shirts open a door for me to tell them that I have Pompe disease, what it is, and to start talking about my journey. Now one more person knows about Pompe. If just one more person living with Pompe could be helped down the line somewhere, it would be a great day!

Not Today Pompe starting out my bi-weekly infusion for pompe disease treatment

On International Pompe Day, Apil 15^th, I wear my Pompe shirts. However, for me, every day is a Pompe Day. Therefore, I wear my custom apparel every day, everywhere I go, to spread awareness and a positive, fun experience with others.  My shirts make me feel like I am a walking billboard for Pompe disease wherever I may roam. It’s important to me to spread my message not only for me, but for others, young or old, in this rare disease community.

Sometimes it is something simple that makes the biggest impact. Just wearing a shirt that says “Not Today Pompe” goes a long way for my mental health in the lifelong journey with Pompe disease. Spreading awareness one t-shirt at a time is something the MDA has done for a long time with their Shamrock campaign and ALS – Lou Gehrig day. I am grateful to be part of something bigger. As an MDA Ambassador, I have a passion for spreading awareness about Pompe disease and other neuromuscular diseases. I am passionate about bringing hope and positivity to everyone – and making a difference in this world one Pompe shirt at a time.