A charity based in London, Ont., has undergone a name change, but says its mission remains the same.
Jesse’s Journey is now Defeat Duchenne Canada and continues to raise awareness and funds for Duchene muscular dystrophy, a disease that causes muscle degeneration and weakness.
The charity was founded in 1995, when John Davidson set out to push his 15-year-old son, Jesse Davidson, 3,300 kilometres across Ontario in his wheelchair.
“One of the things John has said from the beginning is, it may have been Jesse’s story but this was about helping and serving Duchenne families from coast to coast,” said Perry Esler, executive director.
“(The name change) isn’t about leaving anything behind, it’s about moving forward and never forgetting.”
Duchenne muscular dystrophy is more common among boys. Muscle weakness begins around age four and leaves many unable to walk by age 12.
When the charity first started, Esler says there was very little research being done to even invest in, but now it is fielding several project proposals working to develop treatments and cures.
“At this point, there is more hope for many Duchenne families,” he said.
Jesse Davidson, who battled the disease for over 17 years, passed away in 2009 at age 29.
— with files from 980 CFPL’s Sawyer Bogdan