One day a year isn’t enough time to spread Pompe disease awareness

I’m going to be dating myself here, but let’s go for it. Not quite the Stone Age, but around the time “The Flintstones” was on television, I remember watching the “MDA Labor Day Telethon” one year with my parents. I wasn’t sure why we were watching this and not some other show like “Hee Haw” or “Fantasy Island.”

The telethon was hosted by the late comedian Jerry Lewis to raise money for the Muscular Dystrophy Association (MDA). I remember seeing rows of counters with rotary dial telephones on them, and volunteers sitting or standing behind the phones to answer them as they rang. People called in to make donations while Lewis talked about debilitating neuromuscular diseases. It was my first experience with disability awareness, and the memory has stuck with me my whole life.

Now, decades later, I’m one of “Jerry’s kids,” having been diagnosed at age 50 with late-onset Pompe disease.

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Awareness looks different nowadays

Social media and the internet have greatly changed the way people raise awareness about medical conditions. Many disease communities hold challenges or events, such as the MDA’s Muscle Walk and Fill the Boot programs. The ALS Ice Bucket Challenge proved popular, too. Some even dedicate an entire month to awareness efforts.

Dwayne is smashing Pompe for International Pompe Day on April 15. (Courtesy of Dwayne Wilson)

Tomorrow, April 15, is International Pompe Day (IPD) — the one day a year dedicated to Pompe awareness. The International Pompe Association held the first IPD in April 2014, and the event now takes place annually on the 15th.

This year’s IPD slogan is “Together We Are Strong.” Our Pompe community is planning to wear green, as well as anything sloth-related, since sloths are our unofficial mascot. I’m ready to spread awareness about Pompe disease sloth-style!

Dwayne Wilson wears his sloth costume while hanging out by the pool at his sister’s house. (Photo by Jean Gibson)

One day isn’t enough

It’s a bit disheartening, however, that Pompe disease only gets one day a year dedicated to awareness. I’d like to have a whole month! Give me 30 days to post on social media — though even that isn’t enough time. Let me shout it out from the West Coast to the East Coast. Help me raise funds for the United Pompe Foundation, Pompe Alliance, or the Acid Maltase Deficiency Association for an entire month.

But there isn’t a movement in the United States to organize a Pompe Disease Awareness Month. Pompe is so rare that April 15 passes without most people knowing it’s International Pompe Day.

For me, every day is Pompe Day. Living with late-onset Pompe is a daily adventure. My mental health is constantly in flux, and my mind goes in circles faster than a NASCAR race at Daytona Beach, Florida. However, there is no finish line, no cure for Pompe. I just make regular pit stops every other week to get my enzyme replacement therapy, which keeps me going around the track.

I spread awareness about Pompe disease every morning I wake up and every day that I’m still able to drive to work and be productive. Every time I attend a sporting event or concert is an opportunity to spread awareness.

“Slothman Dwayne” wanders through the jungle to spread awareness about Pompe disease. (Photo by Jean Gibson)

With more awareness about Pompe disease, perhaps we can one day turn IPD into a monthlong event. We can influence more lives and contribute to more research for current and future patients. As we all continue “On the Road to Pompe,” let’s make it known on IPD and throughout the rest of April that we are working excitedly toward a better future for our community.

How are you raising awareness on International Pompe Day? Let me know 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.