An expression of the live unlimited spirit, stories and voices of the MDA community
Editor’s note: Sarah Coglianese and her family are featured in this video, in which she talks about living life to the fullest for her daughter, Scarlett, despite ALS. For more visit Sarah’s page on our Live Unlimited hub. She also wrote this piece on her feelings about ALS Awareness Month. May is ALS Awareness Month, . . .
Can we talk? Well, no, actually, we can’t talk… because I can’t really talk. Oh, I can make sounds, but those sounds seldom form themselves into recognizable words. Only my husband and son have the patience to try to understand me, and they’re pretty darn good at it! My nurses try to guess, but . . .
Dear MDA family and friends, As part of MDA’s commitment to provide our DMD community with up-to-date research and advocacy news, we want to let you know that MDA today made another appeal to the U.S. Food and Drug Administration in support of eteplirsen, which, if approved, could help slow progression of the disease for . . .
Three-year-old Paxton is the tiny, grinning powerhouse that keeps his grandpa, Stuart Horton, going. His smile gets Stuart out of bed every morning and, even though it’s tough for the 53-year-old with Charcot-Marie-Tooth disease to travel, it’s his grandson’s future that motivates Stuart to participate in MDA Muscle Walk this year. “It’s the simple things . . .
Claudio Hetz, a professor in the Faculty of Medicine at the University of Chile, was awarded an MDA research grant totaling $294,000 over a period of three years to study a potential new therapy aimed at rescuing motor neurons in amyotrophic lateral sclerosis (ALS). In ALS, some proteins do not fold into their required shape . . .
We’re thrilled to announce a new partnership that will bring MDA’s resources in front of The Mighty‘s wide-reaching readership. MDA will also now have a growing home page on The Mighty where people can get involved with us. The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder and disability. More than . . .
For more than 35 years, ERA Real Estate has been committed to enriching the lives of children and adults living with Muscular Dystrophy and other neuromuscular diseases through its support of MDA. In particular, the ERA network has been helping kids living with muscular dystrophy, SMA and related muscle-debilitating diseases have “the best week of the . . .
Researchers are looking for people with type 1A Charcot-Marie-Tooth disease (CMT1A) to participate in a new pivotal phase 3 clinical trial of the investigational drug PXT3003. The trial aims to determine whether PXT3003 is effective and well-tolerated in people with CMT1A. PXT3003 is an oral low-dose combination of three different drugs designed to target the . . .
Researchers at The Ohio State University are looking for adults, ages 18 years or older, with paramyotonia congenita to participate in a phase 2 open-label study being sponsored by Gilead Science to test the experimental drug ranolazine. Ranolazine currently is approved by the U.S. Food and Drug Administration to treat chest pain in people with . . .
For the past 10 years, MDA families have benefited from a potent, if nontraditional, ally in their fight to end ALS: coffee. Yes, the seemingly simple beverage that millions of people across the country rely on each morning to start their days has helped raise nearly $2 million for ALS research and family support services. . . .
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