The Goldwater Institute is proud to honor Elijah Stacy as the recipient of our 2025 Freedom Award. Elijah’s unwavering courage, resilience, and advocacy for patients’ rights embody the very spirit of freedom and perseverance this award celebrates. As the founder of Destroy Duchenne and a tireless champion for the Right to Try for Individualized Treatments, Elijah has turned personal hardship into a mission of hope—proving that one determined voice can change countless lives. We’re proud to share his full remarks from the Freedom Award ceremony below.
https://www.youtube.com/watch?v=TgmV34lO2Oc
Well, hello everyone. I am deeply honored and quite frankly emotional after seeing that video to be chosen as the 2025 Goldwater Freedom Award winner. I’ve had the pleasure of working with the incredibly brilliant professional and relentless Goldwater staff over the last year on advancing the right to try individualized treatments initiative. And I also wanna say a big shout out and my heart is out to those at Turning Point USA who I learned hear tonight. I was a friend of Charlie Kirk’s and he was helping me in supporting my cause and has been devastating to learn the news that we all know. So my heart is out to you guys at Turning Point USA.
My story all begins when I was six years old as I was diagnosed with a fatal genetic muscle wasting disease known as the Shin Muscular Dystrophy. In short, patients are usually diagnosed between ages four to six, lose the ability to walk around ages nine to 12, lose the function of their arms in their teenage years, and ultimately die on average at age 25 as the muscles responsible for breathing weaken and the heart itself weakens at is as it is a muscle. Since I was 15 years old, I’ve been on a mission to cure Duchenne muscular dystrophy, founding my nonprofit organization called Destroy Duchenne, becoming the author of the bestselling book, A Small If and Sharing my story through Public Speaking Biotech Consulting for six companies, collaborating with celebrities like Mark Wahlberg, meeting leaders like Jeff Bezos and an upcoming Hollywood movie to inspire others and bring global awareness to the fight against Duchenne. I understand the pain and suffering of disease very well as as my younger brother Max passed away from Duchenne when he was 14 years old and my other younger brother Kai has Duchenne. And two months ago my mom, the healthiest person in my family, became the sickest as she was diagnosed with stage four pancreatic cancer.
My mom has been my biggest advocate and now I am in hers. She has fought for me and now I fight for her. I use my background and knowledge to battle with insurance, find her the best oncologist, and be there to encourage her. I told her that me and her are going to get better by Christmas time. That is the dream and that is the hope. I’m happy to say that because of the advances of science, my mom’s CA 19 dash nine a cancer biomarker has fallen from 63,000 to 17,000 after just a couple of treatments, which is a dramatic response.
Today I sit before you as a patient who is 24 years old that isn’t doing well. I’m not able to cough as well as I could. My heart has now started to decline. Simple things like using the restroom now takes hours. I don’t sleep well. As I can’t turn over in my bed. I’ve lost my independence and soon if nothing happens, I will lose my life. My dreams of getting married and starting a family. My dreams of starting an investment firm to advance medical science or my dreams of perhaps brain for office to serve this great nation will cease to exist. However, there is great hope. A biotech called Solus Bioscience who I worked for has recently released data from their Australian adult study, which has shown evidence that muscle regeneration has occurred. One of the patients had undetectable grip strength at zero kilograms of force, and after 20 days of dosing, the patient had five kilograms of force.
They went from not being able to hold a phone to being able to in just 20 days. The patients also experienced strength increases and the muscles responsible for breathing. I hope to gain access to this potentially revolutionary pill. The other great hope is a company called Capricorn Therapeutics, which has shown in clinical trials to stabilize the heart from declining condition. This means patients could potentially be adding decades to their lives. Yet this summer, the Food and Drug Administration rejected CAPCO’S application in its complete response letter. The FDA made it that the treatment helps the heart but dismiss the data as exploratory because they weren’t pre-specified in plain English. FDA acknowledged the cardiac benefit, but then rejected it on a paperwork technicality. Patients like me don’t have time for bureaucratic inefficiency as time is muscle. We’re entering an age in medicine where we don’t have a science problem, but we have a regulation problem.
Our founding fathers would be so proud to see the country they built has led to the free market conditions need to let medical science flourish. But they would be so disappointed to see big government regulations stifle getting those same innovations to we the patients. This is why the right to try is so important because it puts the power back into the hands of the patient. And I believe right to try is bigger than just a law. But it is a movement. A movement that normalizes companies, government, and physicians coming together to give patients the right to try to not die, the right to try to get better, the right to try to have some hope. As Barry Goldwater said, Extrem extremism and the defense of liberty is no vice. I take that to heart in this fight for medical access. ’cause when liberty is to live is denied moderation is no virtue. Thank you so much.
