Jesse's Journey Foundation

Defeat Duchenne. Change Lives.

News & Resources

2021 Federal Election: How You Can Help

Make your voice heard! Join Jesse's Journey in our urgent advocacy efforts for accessible and affordable treatments for those living with Duchenne muscular dystrophy in Canada. How you can get involved: The Canadian Organization for Rare Disorders (CORD) has developed a toolkit to make it easy to engage with candidates and campaign teams in your [...]

Health Canada: National Strategy for Drugs for Rare Diseases Update

In January 2021, Health Canada launched a national online initiative to engage Canadians in the development of a National Strategy for Drugs for Rare Diseases. More than 650 patients, families, stakeholders, and patient organizations - like Jesse's Journey - provided their diverse perspectives on getting better access to the effective drugs they need. Throughout the [...]

Longtime Volunteer Walks Across Canada

This Canada Day, long-time Jesse's Journey volunteer Harry Norris will complete his goal of walking across Canada - without leaving his hometown of Mitchell, Ontario.  Beginning in March 2020, the 76-year-old retired school principal started a journey that saw him walk more than 8,200 kilometres - a distance that would take him coast to coast.  [...]

World Duchenne Awareness Day: September 7, 2021

September 7 is World Duchenne Awareness Day. On this day, Jesse's Journey joins forces with organizations from around the world to raise awareness for Duchenne and Becker Muscular Dystrophy (DMD/BMD). Every year, the World Duchenne Organization sets a special theme to the day that that deserves more attention. This year it will be ‘Adult Life [...]

Jesse’s Journey: Grants $1.7 million to Duchenne muscular dystrophy research

Jesse's Journey, Canada's leader in Duchenne muscular dystrophy funded research, is proud to announce that it will grant $1.7M toward four promising research projects this year - the largest annual amount in its 26-year history. Duchenne muscular dystrophy is a life-threatening, progressive, neuromuscular disorder with no cure. Affecting approximately 1 in every 5,000 boys in [...]

Open Letter to Minister: Reduce the Timing Between Doses for Patients with Neuromuscular Diseases

The Honourable Patty Hajdu, P.C., M.P. Minister of Health Via email: [email protected] Dear Minister Hajdu: We are a group of physicians, health care workers and stakeholders who care for patients with neuromuscular diseases across Canada. We are writing this open letter to request for patients with neuromuscular diseases to be eligible for vaccination doses earlier [...]

Health Canada: Recommendations for National Rare Disease Strategy

Over the last month, Health Canada has opened up a consultation for organizations like Jesse's Journey, to provide recommendations on a discussion paper outlining ways to address access to high-cost rare disease drugs in Canada. There were three different ways to respond: Questionnaire Participate in a public town hall Written submission Jesse's Journey submitted input [...]

COVID-19 and Duchenne

COVID-19 (“coronavirus”) continues to impact our daily lives, and our hearts go out to all those who've been affected. Thank you to all of the health care professionals and everyone on the front lines of this pandemic. Jesse's Journey is here to support the Duchenne community and will continue to provide accurate and timely information [...]

Open Access: Recent studies on Duchenne muscular dystrophy

Recent studies on Duchenne muscular dystrophy (DMD) have greatly deepened our understanding of the primary and secondary pathogenetic mechanisms. Guidelines for the multidisciplinary care for Duchenne that address obtaining a genetic diagnosis and managing the various aspects of the disease have been established. In addition, a number of therapies that aim to restore the missing […]

2020 Year in Review

While we look ahead with hope, possibility, and vision, we take time to reflect on a year like no other. We started January 2020 with fresh excitement to celebrate our 25th anniversary and share a new three-year strategic plan focussed on engaging Duchenne families across Canada like never before. We are proud of what we [...]

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