An expression of the live unlimited spirit, stories and voices of the MDA community
It’s the final week of MDA Shamrocks sales, and Lowe’s and many other retailers across the country still have Shamrocks available. As we head into the final days of the 2016 MDA Shamrock season, please continue to encourage your friends and family to support MDA by purchasing Shamrocks wherever they are sold. And don’t forget to . . .
When a family first receives a muscular dystrophy diagnosis, the news can be overwhelming. Families suddenly find themselves faced with the need to learn about the disease, how to manage their loved one’s care, how to find the right resources, and how to plan for what lies ahead. Even those who have traveled this road . . .
Antoni Barrientos, professor of neurology and of biochemistry and molecular biology at the University of Miami Miller School of Medicine in Miami, Fla., was awarded an MDA research grant totaling $300,000 over a period of three years to address a knowledge gap about mitochondrial protein complex assembly defects, which are a frequent cause of inherited . . .
ReveraGen BioPharma has announced that it has received a $3 million grant from the National Institute of Neurological Disorders and Stroke (NINDS) of the National Institutes of Health to conduct phase 2 clinical trials of vamorolone (previously VBP15) in boys with Duchenne muscular dystrophy (DMD). Vamorolone, a “dissociative steroid,” is an anti-inflammatory compound. Researchers hope . . .
Muscular dystrophy couldn’t keep Paul Robertson from the water, and he doesn’t want muscle disease to stop anyone from doing what they love. “When you get on the water, it’s a sense of freedom. It’s just the thrill of the bite, the thrill of the competition, the thrill of being on the water,” the lifelong . . .
The more I do with MDA, the more I learn about all that MDA is doing behind the scenes for our families. The 2016 Clinical Conference is a great example. The conference convenes world-renowned medical professionals to share best practice and discuss research advances — all for the benefit of MDA families. To attend as . . .
Editor’s note: This blog is adapted from remarks Joe delivered today at the opening session of the 2016 MDA Clinical Conference MDA has been a part of my family’s life ever since I was diagnosed with SMA Type 2 at the MDA Care Center at Children’s Hospital Colorado, and being a part of the MDA family has . . .
One of the best parts of being MDA’s National Goodwill Ambassador is getting to travel the country to places I’ve never been before. Visiting Daytona Beach, Florida, to attend Harley-Davidson’s legendary Bike Week allowed me to indulge my deep love of warm weather, palm trees and beach-side al fresco dining. As a Colorado resident, I’m . . .
During the last few years, we have witnessed unprecedented progress fueled by an astounding volume of research and improvements in care for kids and adults with muscular dystrophy, ALS and related muscle-debilitating diseases that take away strength and mobility. I have been working in the neuromuscular community for more than 15 years, and I am energized . . .
Harvard/MIT scientists and partners are set to spread awareness about neuromuscular diseases in the greater Boston area at the 3rd Annual Strength, Science and Stories of Inspiration (SSSI) 2016. Attend the event, where key stakeholders will come together and facilitate new relationships to accelerate progress toward treatments and cures. In addition, hear about . . .
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