Jesse's Journey Foundation

Defeat Duchenne. Change Lives.

News & Resources

Inaugural Defeat Duchenne Family Forum in Western Canada a Huge Success

More than 75 Canadians came together for the inaugural Defeat Duchenne Family Forum presented by PTC Therapeutics on Saturday, November 2, 2019, in Calgary, Alberta. Families from across Western Canada affected by Duchenne muscular dystrophy came together with world-renowned researchers, clinicians, and industry professionals for a day of education, inspiration, and hope. Read more here.


Double The Impact of Your Gift

Unless you’ve experienced it for yourself, it’s nearly impossible to understand the ramifications of finding out your loved one has Duchenne muscular dystrophy. Jesse’s Journey is lucky to have the support of families who are brave enough to share their stories because they know it’s the only way we can hope to inspire understanding and […]


Vamorolone Extension Trial Supports Muscle Gains in DMD with Fewer Side Effects, Topline Data Show

Vamorolone, an experimental treatment for Duchenne muscular dystrophy (DMD) being developed by ReveraGen Biopharma, continues to improve muscle function in DMD patients with fewer side effects than standard corticosteroids, topline data in 23 boys in an ongoing Phase 2 trial show. These findings were detailed in a late-breaking presentation by Eric Hoffman, PhD, chief executive […]


Edasalonexent Slows DMD Progression in Phase 2 Trial

Phase 2 study results of edasalonexent, an investigational oral small molecule NF-kB inhibitor for the treatment of Duchenne muscular dystrophy (DMD), suggest that the therapy is associated with slowed disease progression, as well as a good safety profile over the course of more than 50 patient-years of exposure in boys with the disease.1 Treatment with […]


Why Canada needs a comprehensive rare disease strategy

With over 7,000 rare conditions already identified and dozens more being discovered every day, it is estimated that rare diseases impact 1 in 12 Canadians, two-thirds of whom are children. But each disease affects only a handful of individuals, so understanding and medical expertise are limited and uneven across the country. Many of these conditions […]


PTC Therapeutics Announces First-Ever Winners of Its PRIORITY Program To Support Research Projects In Rare, Genetic Disorders

– $545,000 awarded to help improve Duchenne muscular dystrophy diagnosis and screening across the globe –SOUTH PLAINFIELD, N.J., May 20, 2019 /PRNewswire/ — PTC Therapeutics, Inc. (NASDAQ: PTCT) today announced the three funding recipients from PRIORITY, an annual program to support outstanding clinical research by the rare genetic disorders community. This year’s funding will accelerate innovative research projects to improve Duchenne […]


Treating Duchenne muscular dystrophy focus of new research partnership

Toronto, Ontario – Muscular Dystrophy Canada (MDC) and The Foundation for Gene & Cell Therapy (Jesse’s Journey) are joining forces to accelerate ground-breaking research focused on new treatments for Duchenne muscular dystrophy to the sum of $600,000. Through this partnership, MDC will provide $300,000 with Jesse’s Journey matching the commitment. Two research projects will be […]


International Preferences for Duchenne Treatments Study

The International Preferences for Duchenne Treatment Study is now open in Canada. Jesse’s Journey has partnered with Johns Hopkins University, Parent Project Muscular Dystrophy, and other Duchenne advocacy organizations from around the world on this important study. This survey is the first international study to measure the preferences and priorities of people with Duchenne and […]


2018 in Review

As 2018 comes to a close, we are taking a look back at a very special year for Jesse’s Journey. Here are just a few of the highlights: This year marked the 20th anniversary of our founder, John Davidson’s, walk across Canada. John set out on April 10, 1998 from St. John’s, Newfoundland with a […]


Jesse’s Journey Grants 10 Millionth Dollar to Research

On November 21, Jesse’s Journey announced to donors, volunteers, and families who are facing Duchenne muscular dystrophy that as of 2018, Jesse’s Journey has granted a cumulative total of more than $10 million to research. For more than 20 years, Jesse’s Journey has been dedicated to funding research focused on Duchenne muscular dystrophy – the […]


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