Jesse's Journey Foundation

Defeat Duchenne. Change Lives.

News & Resources

FDA grants accelerated approval to first drug for Duchenne muscular dystrophy

The U.S. Food and Drug Administration today approved Exondys 51 (eteplirsen) injection, the first drug approved to treat patients with Duchenne muscular dystrophy (DMD). Exondys 51 is specifically indicated for patients who have a confirmed mutation of the dystrophin gene amenable to exon 51 skipping, which affects about 13 percent of the population with DMD. […]


New fundraising events added to Rice Lake Challenge

from Northumberland Today on August 17, 2016 The eighth annual Brian Connor Rice Lake Challenge for Jesse’s Journey has a new twist this year. In fact, there are a few new items to add along with the swim across Rice Lake on Saturday, Aug. 27. Of course there will be the usual 4.5 kilometre swim across […]


Max’s Big Ride reaches the finish line!

Congratulations and thanks to Max, Andrew and the entire Sedmihradsky family!  Jesse’s Journey was pleased to be part of the crowd that welcomed the crew back to Hamilton as they entered Bayfront Park on July 1, 2016 !


Max’s Big Ride marks second successful year

In only its second year, Max’s Big Ride is making a huge difference in raising awareness and funds to cure Duchenne muscular dystrophy. Max, 5, and his dad, Andrew Sedmihradsky, are taking a well-deserved rest these days after a tiring but fun adventure took the pair on an 11-day trek from Ottawa to Hamilton aboard […]


NHS England Enables Access to Translarna™ (ataluren) For Patients with Nonsense Mutation Duchenne Muscular Dystrophy

–Important decision allows reimbursed access to Translarna, the first approved therapy to treat the underlying cause of Duchenne muscular dystrophy– SOUTH PLAINFIELD, N.J., July 7, 2016 /PRNewswire/ — PTC Therapeutics, Inc. (NASDAQ: PTCT) today announced that the company and NHS England have successfully negotiated a Managed Access Agreement (MAA) for Translarna (ataluren) for ambulatory patients […]


Staff changes

In late June, we said goodbye to Sue McKittrick after 10 years with Jesse’s Journey. Sue joined the team in 2006 and focused on managing special events, media relations and communications. She has taken on a new opportunity with Fanshawe College in London – we wish her well and thank her for her significant contributions to […]


SickKids’ new Paediatrician-in-Chief weighs in on how far we’ve come and the power of integration in genetics

On July 1, Dr. Ronald (Ronni) Cohn stepped into his new role as Paediatrician-in-Chief at The Hospital for Sick Children (SickKids). As Cohn, Senior Scientist in Genetics & Genome Biology, prepares to lead SickKids into a genetics-fuelled future, he reflects on how the field has evolved, and looks ahead at the potential of individualized medicine […]


PTC Initiates Phase 2 Clinical Trial of Translarna™ (ataluren) for Treatment of Nonsense Mutation Duchenne Muscular Dystrophy in Pediatric Patients Between the Ages of Two and Five Years

PTC Therapeutics has announced that they have initiated a Phase 2 clinical trial of Translarna™ (ataluren) for children 2 to 5 years old. Details of site locations, etc. are on clinicaltrials.gov.  Below is the announcement from PTC. We are pleased to inform you that PTC Therapeutics has initiated a Phase 2 clinical trial of Translarna™ (ataluren), […]


Jesse’s Journey announces research funding commitment of more than $1M

On June 21, 2016 Jesse’s Journey held a special media announcement at the Best Western Plus Lamplighter Inn & Conference Centre, to release details of our 2016 research funding. Three new research projects have been approved by the Board of Directors for new and existing research projects in 2016 totalling more than $1 million.  The new […]


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