A Q&A with Elijah Stacy, Founder of Destroy Duchenne and Patient Advocate for Duchenne Muscular Dystrophy

On October 14, 2023, Destroy Duchenne will hold its first Gala, which Satellos Biosciences is proud to support. We chatted with Elijah Stacy , founder of Destroy Duchenne nne and author of “A Small If: The Inspiring Story of a 17-Year-Old with a Fatal Disease—and a Mission to Cure It.” He tells us more about the gala, his advocacy work, and his hopes for drug development for Duchenne muscular dystrophy.

1) This is the first-ever Fall Gala for Destroy Duchenne. Why did you decide to hold this event?

I really want to bring together people of all different backgrounds and professions to one unified Gala that is centered on Duchenne muscular dystrophy (DMD). I believe this gives us a platform to inform the public about all things related to DMD that they may not have known otherwise.?

2) What do you hope attendees will take away from this event?

I hope attendees will see all of the good work we are doing for people affected by DMD and our long term vision to improve the lives of those afflicted with this terrible disease. I also really hope people appreciate the scientific progress that has been made that will be presented at our Gala.?

3) Tell us a little bit about your work with biotech companies.? How do you support them?

I represent biotech companies in the media or help with generalized business development, but I really try to help with the things that only a patient with DMD can help with like advocacy and providing the unique perspectives of patients. I foresee myself expanding and working on new arising problems like payer advocacy and regulatory issues.?

4) Why did you want to work with Satellos?

I wanted to work with Satellos because they’re focused on addressing the regeneration problem in DMD, which could potentially lead to patients having function recovered and more mobility. This is something that I think all patients truly desire. Patients want to be able to move again, even if it’s just a little bit more than they can now. And parents want to see their children with DMD be able to move again. The opportunity to potentially be able to give patients their abilities back is emotionally overwhelming and something that is worthy fighting for. If we are successful we will have solved one of the major issues regarding the DMD problem. Faced with this potential possibility, I knew I wanted to be a part of this journey and do everything I can to make this a success.?

5) What is your hope for future drug development in Duchenne?

As a universal and a minimum, I hope we, as a human species, can develop drugs that improve the lives of those with DMD. However, I would really like to see science progress to where we can solve the regeneration and degeneration problem associated with DMD regardless of exon, mutation type, antibody status, or even ambulatory status. It is my sincere hope that we can prevent future generations from ever getting so weak that they have to use a wheelchair as well as save and improve the lives of those in later stages of the disease.?

6) Looking forward, what are you most excited about?

I’m very optimistic about the long term future for DMD, but in the short term I’m hopeful that we are going to be able to save patient’s lives as well as save loved ones from the heartbreak this disease ultimately causes. A future where kids can grow up without ever knowing DMD is a future that excites me.