Q&A with Elijah Stacy, author of “A Small If,” a memoir on living with Duchenne muscular dystrophy

Elijah Stacy is the founder of the 501(c)(3) nonprofit Destroy Duchenne, which he started at the age of fifteen. He is determined to advance gene editing and gene therapy to save his life, his brother’s life, and the lives of thousands of people around the globe who have been diagnosed with Duchenne.

He regularly accepts public speaking engagements and interviews, sharing his story with organizations, companies, and students worldwide. Get in touch with Elijah at elijahjstacy.com.



Q: Give us a brief description of "A Small If"

A: A Small If is a memoir about my life living with all types of adversity and persevering. At the end of the first 13 chapters there’s a life lesson that I learned that I think people will be able to use to overcome their suffering and live more prosperous lives.

Q: Why did you decide to write a book?

A: I wrote A Small If because I want to make the adversities of Duchenne known and to use my suffering to empower others.

Q: What was the writing process for you like? Did you have help? What challenges did you have to overcome while writing it?

A: I started writing my book when I was 16 years old and finished it when I was 17 years old. I really learned a lot about myself as I was in deep reflection of my entire life. It was great to mentally explore how far I have came and how the dots when you connecting.

Q: Tell us what "A Small If" means and how you chose that title.

A: Few years back my doctor said I needed to have back surgery to correct the scoliosis. We went back and forth about not having the surgery. Eventually, I asked my doctor, “If I were able to reserve the current state of my spine could I avoid having the surgery?” My doctor would respond that it’s basically impossible and that he doesn’t want to give me false hope, but that he would give me “A Small If” to reserve the state of my spine. Long story short, I worked really hard and months later I did it — I made my spine straight enough to avoid having the surgery.

Q: What do you hope people get out of reading "A Small If" (i.e. what was your goal in writing the book?)

A: I hope this book motivates, inspires, and gives people hope that they can overcome their suffering and live a prosperous life. While this book provides people that value, I hope it also makes Duchenne a mainstream known disease that people care about.

Q: What is your hope for the future and how do you want "A Small If" to play a role in it?

A: My great hope for the future is genetic diseases being cured and humanity no longer having to do deal with anchor that weighs us all down known as illness. I believe A Small If will help popularize CRISPR and motivate people to want to help advance it forward into human practice.

Q: Why are you most excited about CRISPR in comparison to other treatment methods underway?

A: I’m excited that it can effectively cure diseases, whereas other forms of medicine only treat it. I don’t want a ban-aid, I want a complete healing.

Q: What are your career goals?

A: I want to progress as an author, entrepreneur, investor, and public speaker.

Q: You've been through tough things, how do you manage to stay positive and optimistic?  

A: I maintain a mindset of always persevering and I view adversity as an opportunity to improve my character, which I believe is the most valuable thing we have.