Jesse's Journey Foundation

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News & Resources

Scientists replace piece of gene mutated in Duchenne muscular dystrophy in effort to make healthy

AUGUSTA, Ga. (Dec. 19, 2016) – Scientists are using “gene scissors” to cut off the code of a defective gene that results in progressively weaker muscles and death in Duchenne muscular dystrophy and replace it with a synthetic code they hope will one day restore healthy life to these patients. “We want to use genetically […]


Catabasis Pharmaceuticals Provides Edasalonexent and Rare Disease Pipeline Updates at Investor Day

CAMBRIDGE, Mass.–(BUSINESS WIRE)–Catabasis Pharmaceuticals, Inc. (NASDAQ:CATB), a clinical-stage biopharmaceutical company, today is holding its first Investor Day and will provide an in-depth review of the Company’s strategy and pipeline in rare diseases, including edasalonexent (CAT-1004) and other programs. Guest speakers will include Craig McDonald, M.D., UC Davis NeuroNEXT Program Director, University of California, and H. […]


New research increases understanding of Duchenne muscular dystrophy

BINGHAMTON, NY – A new paper, co-written by faculty at Binghamton University, State University of New York, increases the understanding of Duchenne muscular dystrophy (DMD)–one of the most common lethal genetic disorders–and points to potential therapeutic approaches. “The findings suggest that the immune system has an important role in the muscle disease of Duchenne muscular […]


Eric’s Amazing Race Car Rally for DMD research Oct. 29 in Burlington

Burlington Post The 14th annual Eric’s Amazing Race Car Rally and Silent Auction (for Muscular Dystrophy and Genetic Research), will be held Saturday, Oct. 29. The fundraiser begins at noon at Bruce T. Lindley School, 2510 Cavendish Dr., and ends around 3 p.m. at the Burlington Legion, 828 Legion Rd. Registration will be held between […]


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 […]


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