Author Archives: Charles Moore

Synergy HomeCare and the nonprofit Muscular Dystrophy Association (MDA) have teamed up in a national partnership to improve quality of life and give more independence to people with neuromuscular disorders. The accord aims to develop a new care guide for newly diagnosed patients and their primary caregivers. The guide will offer…

Jiffy Lube and the Muscular Dystrophy Association (MDA) are teaming up again this summer for the 6th annual MUSCLE UP! campaign. Each August for the past five years, Jiffy Lube has campaigned in support of MDA-funded muscular dystrophy and related neuromuscular disease research and programs to help…

The Stephen J. Wampler Foundation has reached an agreement to purchase a new home for Camp Wamp, an outdoor wilderness adventure camp for children with physical disabilities. Previously a Girl Scouts of Northern California camp, the larger, 129-acre wilderness facility is at Deer Lake in the high Sierras near Lake…

Andrea Dalzell, Ms. Wheelchair New York 2015, is featured among the disability advocates who will appear at the United Spinal Association’s 6th Annual Roll on Capitol Hill. Advocates will speak directly with legislators on issues affecting independence and quality of life for members of the the…

CureDuchenne has announced its enthusiastic support and sponsorship of California Senate bill SB 643, which adds Duchenne muscular dystrophy to California’s Genetically Handicapped Persons Program (GHPP) list of eligible medical conditions. The bill, introduced Feb. 17 by Richard Pan (D) — a pediatrician and state senator representing the…

The nonprofit Duchenne muscular dystrophy (DMD) research and advocacy organization Parent Project Muscular Dystrophy (PPMD) awarded a $2.2 million grant to Jerry Mendell, MD, PhD; co-principal investigator Louise Rodino-Klapac, PhD; and Nationwide Children’s Hospital in Columbus, Ohio, where they both work. The funding will support…

The study of rare diseases is typically short-changed with research funding, and the creation and sharing of tools to fight these disorders is the mission of a new initiative launched at the University of North Carolina at Chapel Hill. The UNC Catalyst for Rare Diseases project, funded…

CureDuchenne Ventures is investing in Therapeutic Research in Neuromuscular Disorders Solutions (TRiNDS), a new specialized contract research organization. TRiNDS is hived off from the Cooperative International Neuromuscular Research Group (CINRG), an academic consortium that studies causes, pathogenesis and clinical outcomes of neuromuscular disorders, and conducts well-controlled clinical studies…

At Catabasis Pharmaceuticals’ first Investor Day earlier this month, the company provided an in-depth review of its strategy and development pipeline of product candidates for treating rare diseases, including the Duchenne muscular dystrophy drug edasalonexent (CAT-1004). Guest speakers included Craig McDonald, MD, director of the NeuroNEXT Program at…

Nonprofit organizations CureDuchenne and Art In Giving are co-hosting a “Dealing for Duchenne” charity event in Cambridge, Massachusetts, on Oct. 20 to support the quest for a Duchenne muscular dystrophy (DMD) cure. Cambridge will emulate vintage Vegas for a one-off night featuring poker, blackjack, and other classic…