On January 30, 2025, we proudly celebrated 30 years of progress with our 30th Anniversary Launch, an inspiring evening that set the stage for the future of Duchenne research and support. This milestone event preceded the 2024 Research Grant Announcement and was filled with exciting updates, big announcements, and renewed hope for the road ahead.
Thirty years ago, John Davidson set out on the journey that started it all. When his son, Jesse, was diagnosed with Duchenne muscular dystrophy – a disease with no cure, no treatment, and very little information available at the time, John knew he needed to take action. He pushed Jesse in his wheelchair across Ontario to raise awareness and funds for research.
Their determination sparked the creation of Jesse’s Journey, which has grown over three decades from a heroic young man and his dedicated father to a national movement uniting thousands of supporters in the fight to defeat Duchenne. Today, that legacy continues as Defeat Duchenne Canada, and the impact we’ve made together is greater than ever.
John Takes to the Road Again
On January 30, John Davidson made an incredibly inspirational and exciting announcement for the Canadian Duchenne community: he will walk 30 km on June 10 to honour Jesse’s legacy.
“Jesse didn’t live to see our dream fulfilled, but his legacy lives on. To honour Jesse for all that he did for others, this spring, I am going to again take to the road to pay tribute to Jesse and what he did 30 years ago and to celebrate the amazing journey that started us down the long, long research road – on route to a cure.”
John Davidson, Jesse’s Dad & Founder of Jesse’s Journey/Defeat Duchenne Canada
In 1995, John and Jesse covered just over 30 km daily for 124 days, bringing national attention to Duchenne. Then, in 1998, John walked solo across Canada, raising even more funds to advance research. This year, John will retrace one of those 30 km segments, walking from Port Stanley on Lake Erie to Victoria Park in London, Ontario.
His goal? To celebrate how far we’ve come and to mark yet another major milestone: committing our $20 millionth dollar to Duchenne research since that first journey 30 years ago.
$20 Million in Research Funding – And We’re Not Stopping Until There’s a Cure
Over the past three decades, thanks to countless donors, Defeat Duchenne Canada has invested nearly $18.7 million in world-class research. With the new commitments made on Thursday night, Defeat Duchenne Canada is on track to grant its $20 millionth dollar before the end of 2025.
“This year we are very likely to see the first ever treatment for DMD approved in Canada, with others on the horizon. We are seeing more clinical trials coming to Canada and many potentially life-changing treatments being investigated worldwide.”
Lisa McCoy, CEO of Defeat Duchenne Canada
The future for our Canadian Duchenne community is bright and we are looking to accelerate the progress to the best of our ability. Because every family affected by Duchenne knows that with every minute, precious muscle is lost. Time is muscle.
Announcing Two New Research Grants
After receiving updates from our eight current researchers, we were thrilled to announce over $900,000 in funding for two groundbreaking new projects:
- Dr. Francesco Muntoni (UCL Great Ormond Street Institute of Child Health, UK) is researching AAV gene therapy for DMD related brain dystrophin deficiency. His work will provide critical insights into how Duchenne affects the brain and how gene therapy could address these challenges.
- Dr. Alain Stintzi’s (University of Ottawa) research project is titled “Unlocking Therapeutic Potential: Exploring Gut Microbiota Functionality for Novel and Cost-effective DMD Treatment.” His research combines genetics, medicine, chemistry, and bioinformatics to explore how gut health may impact disease progression and treatment.
These projects bring us even closer to life-changing treatments and, one day, a cure.
Looking Ahead: You Are Making Progress Possible
Defeat Duchenne Canada is already preparing for our next grant cycle, seeking the most innovative Duchenne research to invest in. Stay tuned for changes and advances in our research grant procedures in 2025 to make sure that we are funding projects that mean the most to our families.
This year, in our 30th year, we are determined to reach $20 million in total research funding. This is a milestone that is made possible by donors, sponsors, volunteers, and families like yours. All of this grew from the love of one father for his son. If you think you can’t make that same difference, John and Jesse’s story proves that you can. Thank you for being a part of this journey.
Keep up with us throughout the year as we continue to celebrate and honour three incredible decades of resilience and advancements.