Duchenne muscular dystrophy has very limited treatment options and still remains a disease that leaves a young boy wheelchair bound in the prime of their youth. On the plus side, we have a good understanding of the disease, its genetics, and its pathophysiology. Back in the 1990s, we knew very little about the disease and then, like now, young boys were confined to a wheelchair.
In 1995, Jesse Davidson, a 15-year-old wheelchair bound DMD patient, was pushed by his father, John, across the province of Ontario (3339 kilometers) to raise awareness about the condition. That labor of love captured the country’s attention and by the end of the walk, they had raised $1.5 millions that they donated to research. Soon after given the money to research, the family realized that more research is still needed. So in 1998, John decided to walk a bit farther and walked across the entire country (8300 kilometers). This year is the 20th anniversary of that walk and the organization – Jesse’s Journey – is still raising awareness and funds for Duchenne muscular dystrophy.
Recently, we talked with Rick Moss, director of special projects for Jesse’s Journey on how the registered charity has continued to focus on research but is also starting to contemplate a focus on policy as well.
Moss said, “This year, we are celebrating the 20th anniversary of John’s walk across Canada. Back then, John, with the help of an incredible team of volunteers, was able to raise about $2 million and that helped establish the establish the the Jesse Davidson Endowment Fund.”
“John’s goal was to have a consistent fund that would fund research every year going forward so we that the bank wouldn’t be empty. Their goal at the time was to build that endowment over time to $10 million and a grant $1 million a year to research.”
Today, that endowment has over $10 million and they are granting over $1 million each year in rants towards Duchenne research.
And while John would love to have the strength and energy to walk across Canada again, his 70-year-old body thinks it is time for others to virtually do the walk. This year, Jesse’s Journey is organizing a virtual walk-run-roll.
In the virtual walk-run-roll, persons or teams keep track of their activities to see how far they can get across Canada but just walking/running/rolling around their own neighbourhood.
Registration is at http://www.jessesjourney.com/vwrr/ and our readers are encouraged to participate to:
- help a great cause
- stimulate research and awareness
- get in better shape
- see how far you can walk across Canada between the months of February to October.
For more information about Jesse’s Journey and Duchenne muscular dystrophy, visit www.jessesjourney.com