Jesse’s Journey, a charity that started in 1995 by rolling coins at the kitchen table, is now a leader in funding research for Duchenne muscular dystrophy (DMD).
The organization’s namesake, Jesse Davidson, who battled the disease for over 17 years, passed away 10 years ago Nov. 6 at the age of 29.
The story of Jesse’s Journey began in 1995, when John Davidson set out to push his 15-year-old son 3,300 kilometres across Ontario in his wheelchair.
At the time of Jesse’s diagnosis, there was little that could be done about the disease apart from tracking its progression.
Duchenne muscular dystrophy is more common among boys. Muscle weakness begins around the age of four and leaves many unable to walk by age 12.
Looking back, Executive Director of Jesse’s Journey Perry Esler said it’s hard to believe how far the organization has come.
“Even in the last decade since Jesse’s death, I think people would look at it with admiration because we are seeing more trials and treatments happening in young boys across the country today than at any point in history,” Esler said.
“We recently spoke to a family who just heard the news this past summer and all they wanted to know was is there hope, and I think we can say that today a little more clearly then we could have years ago.”
In the years since Jesse’s passing, people diagnosed with Duchenne muscular dystrophy now have access to treatments that can limit or even stop its progression.
An endowment set up by the charity donates over $1 million every year to help researchers fight the disease.
When they first started, Esler said there was very little research being done to even invest in, but now they are fielding proposals from 25 different projects working to develop treatments and cures.
Jesse’s father John said it feels just like yesterday that his son passed away.
“It’s ironic that someone who eventually lost his ability to walk left such a big pair of shoes to fill,” he said.