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For me, a frequent source of frustration stemming from having a rare disease like Duchenne muscular dystrophy (DMD) is its rarity. Less occurrence of a disease logically leads to typically fewer people knowing of its existence. This, I think, is one of the main reasons others around me might not understand just what I go through on a daily basis. It’s no fault of their own, but it still gives me a sense of loneliness.

I recently talked with someone who appears to be changing the status-quo knowledge people have about DMD. His name is Elijah Stacy.

Stacy has DMD and is an author, motivational speaker, and founder of a nonprofit. He is only 20 years old. The charity is called Destroy Duchenne, and he was just 15 when it started. Its founding was sparked by his motivation to alter the perception of DMD.

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“I was at a fundraiser for Duchenne and reading a booklet. It was saying, ‘Oh, you know, you lose mobility in your arms, and then it’s fatal. Most people pass away when they’re 25,’” Stacy recounted. “I read that and thought, ‘Oh no, no, no, no. Let’s see what I can do about it.’ I’m somebody that likes to prove people wrong and show them that they’re wrong, basically.”

Read about HCP resources for DMD

“From that day forward, I thought, ‘I’m going to go start a business. I love business. Why don’t I start one that can do something about this disease?’”

Destroy Duchenne has a stated goal of “complete the cure” for DMD. It champions the prospect of gene-editing therapies, ultimately being what restores the health of those afflicted with the disease. Stacy presently is a shareholder in the biotechnology company Satellos Bioscience. Their research is targeted toward the regeneration of muscle tissue. Another goal of his nonprofit is to simply make it a disease that isn’t obscure, but rather well-known, he added.

The title of Stacy’s 2021 memoir, A Small If: The Inspiring Story of a 17-Year-Old with a Fatal Disease—and a Mission to Cure It, comes from his doctor’s reluctance to accept that he will not undergo spinal surgery for scoliosis, which is common amongst patients with DMD. The physician gave him “a small if,” if that was his chosen route. In the book’s summary, it is revealed that he was able to stabilize the curve of his spine through physical therapy. He says the book is also another strategy for making DMD known and maybe has more extensive meanings with its message of perseverance.

Elijah Stacy is a rising voice advocating for the DMD community. His efforts have drawn the attention of Amazon’s Jeff Bezos. Credit: Rashaud Owen

“As I was writing it, I started to realize that the book is bigger than just the disease. It could be something that really helps people,” Stacy said.

Being an enthusiast of business, it’s no surprise that Stacy’s role model is the founder of arguably one of the most successful businesses ever created, Amazon’s Jeff Bezos. Stacy had a dream of getting in front of Bezos for a conversation. Through the Make-A-Wish Foundation, that became a reality.

In a review of Stacy’s memoir, Bezos states: “Elijah’s optimistic nature is one of his stand-out characteristics, and it’s inspiring.”

Stacy’s memoir is now slated to hit the silver screen and be adapted into a 13-episode limited series by showrunner David Renaud, who has been an executive producer for ABC’s successful medical drama The Good Doctor. Stacy is excited about the potential this has to shed new light on DMD.

“Well, I think that we’re going to make Duchenne globally known, to be honest,“ he said. “Because when you connect with people in Hollywood, and you have that much attention on you, you can really raise a lot of money quickly, and you can really help advance science. So it’s a massive win.”

It’s starting to look pretty promising for the future of DMD awareness. That’s no small if.