How my childhood prepared me for a life of Pompe disease advocacy

For this columnist, diagnosis meant a world of new opportunities

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by Dwayne Wilson |

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When I was a kid, I liked to build things with Legos and Lincoln Logs. I had Tinker Toys and Erector sets to build cars, cranes, buildings, and more. All of the blocks, bricks, and logs were of different sizes and shapes, and when they were put together, I had fun playing with the final project. Each component played a vital role in completing the toys to make them work.

Patient advocacy is like the never-ending toy set I’m trying to build, except as an adult living with late-onset Pompe disease.

I started with having custom T-shirts made of my favorite sports teams with Pompe-related themes or sayings on them. I buy other T-shirts from Pompe families to support their fundraisers for research. Spreading awareness one T-shirt at a time helps me bring up Pompe disease to others.

A man in a purple T-shirt that says "Muscle Juice" stands next to an IV pole and makes a heart shape with his hands.

Dwayne Wilson sports his newest Muscle Juice T-shirt in support of Grant’s Giants Pompe Nonprofit. (Photo by Dwayne Wilson)

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Another piece of the set is being a patient speaker for a biotech company that conducts research and development for metabolic diseases. That component provided me the opportunity to be a part of the WorldSymposium in February 2022, where I was interviewed by my neuromuscular specialist about living with Pompe disease. That gave me a platform to share my story about my diagnosis and journey so far.

I followed that up with an even bigger piece of my set by becoming a columnist for Pompe Disease News, which allows me to spread awareness about Pompe disease by sharing my journey and giving people a glimpse of my life. I also pursue these goals on social media. (Follow me on Instagram, X, and Facebook.)

My aim is to provide hope to others on a similar journey. I can spread positivity to patients and let them know that being diagnosed is not the end of the world. Instead, it’s a new beginning that provides an opportunity to think outside of the box and do things differently.

All of these components have built a future for my patient advocacy. But it all must have a foundation to support it. For me, that foundation is the Muscular Dystrophy Association (MDA).

My journey to now

After being diagnosed, I was scheduled for appointments with my specialist every six months. During my first appointment at the ALS & Neuromuscular Center at UCI Health in Orange County, California, I was seen by an MDA Care Center representative. That’s when I started to learn more about the MDA.

During the visit, I was given the MDA Quest magazine and learned about Muscle Walks, an activity geared toward raising awareness and funding for research. A Muscle Walk was happening in my area just a few months after I’d read about it. Without hesitation, I signed up as a team leader. I called some friends and family members and asked them to join me in walking.

By the time the event happened, my team, Team Hope for Pompe, was the No. 1 fundraising team. I was the top fundraiser for the 2019 Los Angeles Muscle Walk!

A screenshot of an MDA website profile for Dwayne Wilson. The shot contains a QR Code to read more of Dwayne's story.

Dwayne Wilson’s MDA National Ambassador profile. Scan the QR Code to read his story. (Screenshot via MDA)

This success led me to become an MDA National Ambassador to help raise awareness about muscle diseases. Because of the pandemic, most events I’ve attended have been held virtually. I’ve also been in some roundtable discussions about Pompe. Recently, I was asked to represent the MDA for the first Exile Ryders Motorcycle Ride after-party and fundraiser, held in Industry, California. (Donations are still being accepted at the link provided.)

Being an MDA Ambassador provided me an opportunity to share my story and thank all of the riders and their families for supporting those living with muscular dystrophy. Proceeds from food and drink sales during lunch went to the MDA. My wife, whom I deeply appreciate, helped sell raffle tickets for some cool motorcycle helmets and other prizes.

A white T-shirt with black and green lettering hangs on a plastic hook. The T-shirt says "Stronger Together."

A T-shirt commemorates the first annual Exile Ryders Motorcycle Ride for MDA, held July 30 in Industry, California. (Courtesy of Jean Gibson)

Over 150 bikers participated, and I met some interesting people. I visited with other MDA volunteers as well, one of whom had just come from helping at an MDA Summer Camp for kids. It’s great to make new friends and meet people affected by neuromuscular diseases.

All of these components help me build something beautiful in my life. My journey is far from over. I hope to add more blocks and bricks to my story. I’m always open to seeing what might come next, ensuring that I keep building “On the Road to Pompe.”

What components can you add to your journey? Please share in the comments below. 

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Pompe disease.


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