PPMD’s ‘Run For Our Sons’ Fundraising Events Can Use Your Help

Parent Project Muscular Dystrophy (PPMD) is promoting a series of running events this year to raise money for research to help end Duchenne muscular dystrophy (DMD). The next Run For Our Sons event will be an official charity partner of the Rock n’ Roll Raleigh Marathon, Half…

Researchers have received $119,999 in funding to test the effectiveness of a gene therapy approach in Charcot-Marie-Tooth neuropathy X type 1 (CMTX1), the second most common form of Charcot-Marie-Tooth disease (CMT). The award was granted by the Muscular Dystrophy Association (MDA) and the Charcot-Marie-Tooth Association (CMTA) to Kleopas…

One of the stars of the MTV reality show Teen Moms 2, Leah Messer, is opening up about her seven-year-old twin daughters Ali and Gracie and the impact muscular dystrophy has had on their lives. Ali was diagnosed with muscular dystrophy when she was four years old, and Leah’s decided that Ali’s twin…

PTC Therapeutics, Inc. has entered into an asset purchase agreement with Marathon Pharmaceuticals to acquire all rights to Emflaza (deflazacort), which was approved in February by the U.S. Food Drug Administration to treat Duchenne muscular dystrophy patients 5 years and older, regardless of their genetic mutation. News about…

A Napa Valley fundraiser in Newport Beach, California, earlier this month attracted more than 400 people and raised at least $1 million for Duchenne muscular dystrophy (DMD) research. The Napa in Newport wine auction on March 4 supported the mission of the nonprofit group CureDuchenne — to improve the lives…

The balance of children with Duchenne muscular dystrophy who are moving becomes worse as the disease progresses, suggesting that balanced-focused interventions may improve the children’s ability to handle everyday tasks. The study, by researchers at Hacettepe University in Turkey, noted that Duchenne progresses differently in different children. That suggests…

If you suffer from a chronic illness, then it’s highly likely that you’ll experience fatigue from time to time. Fatigue is different than just feeling tired, and generally it’s not something that can be fixed with an early night or by resting for a little while. With tips from the pros at …

According to a report from Fox 8 Cleveland, a young boy from Ravenna, Ohio is to become the first muscular dystrophy patient in the state to receive the newly FDA-approved drug Exondys 51. Two brothers from Connecticut take advantage of the temporary approval of Exondys 51. Find out…

Catabasis Pharmaceuticals will present results from Part B of the MoveDMD trial of edasalonexent (CAT-1004) for the treatment of Duchenne muscular dystrophy (DMD). According to a press release, the presentation, “MoveDMD: Phase 1/2 trial of Edasalonexent, an NF-kB Inhibitor, in 4- to 7-Year-Old Patients with Duchenne Muscular…

The Muscular Dystrophy Association (MDA) has awarded $7 million in grants to 29 top researchers for projects it says will potentially make a big impact on muscular dystrophy and other life-threatening diseases. The investment reflects the nonprofit organization’s plan to double spending on drug development and clinical trials by 2020. Each year,…