On March 6, 2016, a bomb went off in my life. Its name was ALS. I had vaguely heard of ALS by way of YouTube “Ice Bucket Challenge” videoes. But that day, the most important person in my life, my Dad, Dr. John J. Hutton, was given, as he termed in, “a death sentence.” He . . .
I don’t know about you, my ALS brothers and sisters, but there have been times during my ALS sojourn when I have needed a real laugh to chase the blues away … But at some point, when speaking and breathing became more of an effort, I lost the ability to laugh. I, who had spent . . .
Over the last six decades, MDA has committed $1 billion to research designed to move the world closer to treatments and cures for muscular dystrophy, ALS and related life-threatening diseases. As a result, MDA’s fingerprints are on nearly every major neuromuscular disease research breakthrough, and the progress we continue to see in the field is . . .
Since its inception, MDA has invested more than $1 billion in neuromuscular disease research to uncover new treatments and cures. In 2016 alone, MDA awarded 66 new research, development and research infrastructure grants with a total funding commitment of more than $17 million. These and other MDA grants fund research projects designed to uncover the . . .
This summer MDA challenged our families, friends, sponsors, staff and others around the nation to share their stories about living life without limits despite the challenges of neuromuscular disease. Some shared moments tied to pursuing an education or career that was thought to be out of reach. Some talked about skydiving, hiking or running a . . .
Osaka-based Mitsubishi Tanabe Pharma announced today that its New Drug Application (NDA) for the drug edaravone to treat people with ALS (amyotrophic lateral sclerosis) was accepted by the U.S. Food and Drug Administration. The Japanese pharmaceutical company said it expects a decision on whether it can market the drug in the United States by June 16, 2017. . . .
Steven Markus, assistant professor at Colorado State University in Fort Collins, Colo., was awarded an MDA research grant totaling $300,000 over a period of three years to study alterations in the dynein gene and their effects in spinal muscular atrophy (SMA) and amyotrophic lateral sclerosis (ALS). His work to elucidate the molecular basis for dynein . . .
When I was a junior in high school, my father was diagnosed with ALS. At the time, I didn’t know what it was or what it meant, and Icould hardly imagine that I would make a career working for an organization whose mission is to find treatments and cures for ALS and other related muscle-debilitating diseases. . . .
A bright light in our community has been extinguished. Ray Spooner — beloved husband, father, grandfather, son, brother, nurse midwife and cyclist — died yesterday, August 8, 2016, of ALS. Ray was diagnosed in 2014, just months after participating in the inaugural Ice Bucket Challenge, and in 2015 set off to cross an item off . . .
In March 2016, experts in the ALS community gathered at the ALS Clinical Trials Guidelines 2016 Workshop, supported in part by MDA. With the aim of improving the testing process for experimental therapies to treat ALS, a multinational group that included neurologists, basic scientists, statisticians, patient advocates, representatives from the pharmaceutical industry, regulatory agencies and . . .