Mary Chapman, features writer —

The sixth annual Napa in Newport wine auction raised more than $1 million to support CureDuchenne’s mission to extend and enhance the lives of people with Duchenne muscular dystrophy (DMD) and find a cure for the disorder, the nonprofit group said. Held Feb. 29 at the…

Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, and aims to supports work by researchers and clinicians into a better understanding of and treatments for rare diseases, as well…

Continuing its support, CITGO marketer Graham Enterprise (GEI) raised $123,000 last year for the Muscular Dystrophy Association (MDA). With support from its network of retailers and marketers, including Illinois-based Graham Enterprise, CITGO is the MDA’s largest corporate sponsor. To date, the petroleum company has collected more than $250…

Four grassroots organizations are collaboratively funding a $200,000 grant to a University of Missouri School of Medicine researcher to develop next-generation gene therapy vectors for Duchenne muscular dystrophy (DMD). The foundations Ryan’s Quest, Michael’s Cause, Pietro’s Fight, and Powers Promise are awarding the…

PTC Therapeutics has launched its sixth annual global grant program for patient advocacy organizations that seek to develop innovative projects for the Duchenne muscular dystrophy (DMD) community. Currently focused on DMD, the Strategies to Realize Innovation, Vision and Empowerment (STRIVE) program supports nonprofits that seek to create…

An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

People known as “consumer advocates” have joined top scientists since 2011 in helping to determine how funds appropriated by the U.S. Congress will be spent on Duchenne muscular dystrophy (DMD) research. Recently, Tiffany Cook and Clint M. Porter got their turn at patient representation. Cook and Porter’s influence derived…

Longtime Muscular Dystrophy Association (MDA) supporter CN Brown Company, a CITGO Petroleum Corporation (CITGO) marketer, raised more than $300,000 for the MDA’s Maine chapter in 2019. “Our family’s commitment to helping win the fight for families affected by MDA has remained strong for generations,” Jeff Jones, CN…

Kevin Schaefer hadn’t been in an airport since he was 4 years old, so he had been looking forward to flying from his home in Cary, North Carolina, to Anaheim, California, in June for the 2019 Cure SMA Conference. As it turned out, his experience didn’t go as expected.

Parent Project Muscular Dystrophy (PPMD) will use PerkinElmer‘s recently federally authorized test to aid newborn screening for Duchenne muscular dystrophy (DMD) in a newly launched pilot program in New York state. Results from the two-year Newborn Screening Pilot for Duchenne Muscular Dystrophy, launched in collaboration with consortia…