Jesse's Journey Foundation

Defeat Duchenne. Change Lives.

News & Resources

Catabasis Connection: Issue 25

Catabasis has shared its March 2020 update: Catabasis provided an update regarding COVID-19 and Duchenne, FAQ’s, and shared the presentation slides from the MDA Virtual Clinical Trials Session. March 2020 – Catabasis Connection Issue 25 Edasalonexent Update:  In Duchenne, the loss of dystrophin leads to chronic activation of NF-kB, which is a key driver of […]


Santhera Pharmaceuticals: Annual Report

Santhera Pharmaceuticals shared its 2019 Annual Results and Highlights Piepleine Progress for Duchenne muscular dystrophy.  “Santhera is emerging as a leader in addressing rare neuromuscular diseases and 2019 saw us prepare the business for several significant value inflection points this year for our drug candidatesto treat DMD,” said Dario Eklund, CEO of Santhera. “The regulatory […]


Solid Biosciences: IGNITE DMD Clinical Trial Update

Solid Biosciences Inc. has provided an update on the IGNITE DMD phase I/II microdystrophin gene therapy clinical program. As previously reported in late 2019, the IGNITE DMD clinical program was placed on hold. Today, they announced the biomarker data from the third patient dosed in the 2E14 vg/kg dose cohort of IGNITE DMD, including three-month […]


Catabasis Connection: Issue 24

Catabasis has shared its February 2020 update: “February is all about the heart and that’s a big focus for us, too! Because the cardiac function is so vital to those affected by Duchenne, we’re passionate to learn more about the heart and edasalonexent in our Phase 3 PolarisDMD trial. In young boys affected by Duchenne, […]


Rare Disease Day 2020

Did you know approximately 1 in 12 Canadians, two-thirds of them children, are affected by a rare disease? Saturday, February 29, 2020, is Rare Disease Day, and we ask for your help in raising awareness of Duchenne muscular dystrophy. Though Duchenne is the most common fatal genetic disorder diagnosed in childhood, it is considered a […]


New Neuromuscular Network for Canada

Jesse’s Journey is proud to represent the Duchenne community in the new neuromuscular network for Canada, NMD4C (NMD for Canada). The neuromuscular network for Canada brings together the country’s leading clinical, scientific, technical and patient expertise to improve care, research and collaboration in neuromuscular disease. Launched in January 2020 with funding from the Canadian Institutes of Health […]


Celebrate Past – Ignite New Vision

2020 is an exciting year for Jesse’s Journey as we celebrate our past and ignite a bold new vision for our future. This year marks the 25th anniversary of the organization as our founder, John Davidson, set out on an incredible mission to push his son, Jesse, across Ontario in his wheelchair – a trek of 3,339 […]


Santhera Pharmaceuticals: New Year Update

Santhera Pharmaceuticals have shared their January update.    “Our main focus in the U.S. in the first half of the year is to bring the SIDEROS clinical trial to full enrollment and we ask the community’s help, now more than ever, to achieve this goal. The SIDEROS clinical trial, which investigates the safety and efficacy […]


Sarepta Therapeutics Announces Partnership with Roche

Sarepta Therapeutics Announces Partnership with Roche in Territories Outside the United States for its Investigational Micro-dystrophin Gene Therapy for Duchenne Muscular Dystrophy, SRP-9001 “…Sarepta and Roche have entered into a licensing agreement that would provide Roche exclusive rights to SRP-9001 (AAVrh74.MHCK7.micro-dystrophin) outside of the United States. As a mission-driven organization committed to families impacted by […]


Jesse’s Journey Provides Game-Changing Grant Towards Therapeutic Trial

Jesse’s Journey is proud to announce its gift of $300,000 towards a breakthrough clinical trial, which may empower local researchers to discover a therapeutic solution to the degenerative disease Duchenne muscular dystrophy. The clinical trial is building upon promising Phase I research involving myoblast transplantation. This therapeutic approach applies to all Duchenne patients, independently of […]


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