#DuchenneCan: celebrating what people with Duchenne CAN achieve
The global movement, #DuchenneCan, has drawn inspiration from witnessing what people living with Duchenne CAN achieve. From graduating as genetic scientists to winning Olympic gold medals… each #DuchenneCan story is a testament to the determination and positive can-do attitude of those affected by a disabling rare disease
Life with a rare disease, such as Duchenne muscular dystrophy (DMD), is challenging. Most children with DMD become wheelchair users in their teens, as well as facing an array of debilitating effects such as muscle weakness, breathing difficulties and cardiac problems.1,2 Those living with the disease, and their supporters, require incredible strength and resilience.
This is exactly why #DuchenneCan was founded. The campaign started by PTC Therapeutics, a biopharmaceutical company which specialises in rare diseases, celebrates individuals with DMD, those who love and care for them, and the patient groups who advocate for them. With over 30 featured stories to date, the campaign has become a source of life-affirming positivity and inspiration for those in the DMD community and beyond.
Meet Elijah Stacy. An established entrepreneur, public speaker, published author with an Amazon best-selling book under his belt and a TV series on the way soon (watch this space…), Elijah is the embodiment of what CAN be achieved while living with Duchenne.
When he was just 15-years old, Elijah founded Destroy Duchenne, a non-profit organisation that aims to “complete the cure” for DMD by advancing gene therapy and editing technologies. He has since authored his own book, A Small IF, which discusses the thirteen lessons he has learned through his life and journey with DMD.
Elijah’s motivation behind his work is particularly poignant; he aims to bring hope not only to thousands of people affected by DMD globally, but to his own brother, who was also diagnosed with the disease.
We spoke to Elijah about his journey with DMD, including his proudest achievements, and how positive movements such as #DuchenneCan help foster solidarity within the rare disease community.
Q: As the aim of #DuchenneCan is to celebrate the many accomplishments achieved within the community, what has been your proudest achievement so far?
Elijah: I could say my book, or my foundation, but it’s not a particular thing. It’s more of a mindset. I am genuinely proud of myself for being able to push through adversity. You can’t beat me in terms of my mindset, and that is something that I am sincerely proud of. I am proud of my character, which has allowed me to persevere through a lot.
Q: What inspired you to take part in #DuchenneCan?
Elijah: What instantly drew me to #DuchenneCan was being able to help. Just being able to use my story and experiences to help the overall cause. I thought it was a great opportunity.
Q: Do you feel like you have a strong support system/network within the DMD community?
Elijah: First and foremost, my support network comes from my family. I am very fortunate to have my mom and dad as my parents. They never let me be limited by my disease or my wheelchair. They always believed in me, for example when I started my own non-profit when I was 15 years old, which I’m pretty sure some parents would consider a pretty crazy decision! I also have support from my brother, family, great friends, board of directors in my non-profit, and people within the DMD community. I find that people in the community are generally quite helpful. The community is a very close and connected one.
Q: Do you think campaigns such as DuchenneCan are important to raise the voice of the DMD community?
Elijah: 100%. You may remember a social media trend called the ALS Ice Bucket Challenge a few years ago. It went viral on Facebook, and all over the world people were throwing ice-cold buckets of water over their head for amyotrophic lateral sclerosis (ALS). I did the DMD Ice Cup Challenge—and the reason why it’s a cup is to symbolise DMD as a youth disease as compared to ALS, which is more common as an adult disease. I had a lot of success with the campaign—even people in Nigeria were doing it at one point. People in biotechs were doing it, students were doing it, and many others in Canada, Spain and Dubai. Social media has the power to reach people, and campaigns such as DuchenneCan unite people together for a cause.
Q: In your opinion, what is the need for better awareness of Duchenne?
Elijah: You’ve got to have a personal connection with DMD. If you look at ALS, you have Lou Gehrig as its representative. If you look at Parkinson’s, you have Michael J Fox, who used his celebrity status and has helped raise awareness and funding for the community. Magic Johnson, who is personally affected by HIV, smashed the HIV stigma in the 1990s. All these people are very famous and they represent the disease they advocate for. DMD hasn’t had that yet, and the reason why is because people with the condition may not have survived beyond their 20s previously. It’s getting better now of course, and I think we need someone to be the public figure of the disease, someone that people care about. When you have that, it becomes personal to people, and it clicks. We need support groups and information to be shared for people to go deep into the disease. But for that initial contact of awareness, we need a face behind it. That is why I am really keen on venturing into Hollywood and the film industry, because I believe that it has enormous potential to raise the awareness we need.
Elijah Stacy
Since its launch in early 2021, #DuchenneCan has brought together stories of inspiring individuals and their strength and determination to create a growing online community and further raise awareness of Duchenne globally. To meet more of the #DuchenneCan participants, visit duchennecan.com
[1] Mendell JR, Lloyd-Puryear M. Muscle Nerve. 2013;48:21–26.
[2] Birnkrant DJ, et al. Lancet Neurol. 2018;17:251–267.
This article is developed and sponsored by PTC Therapeutics in collaboration with an external contributor.
ATA/DMD/UK/22/0118 | Date of preparation: November 2022
