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 . . .
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 . . .
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. . . .
Christine Vande Velde, associate professor at the University of Montreal CHUM Research Center in Montreal, Quebec (Canada), was awarded an MDA research grant totaling $300,000 over a period of three years to study what goes wrong in amyotrophic lateral sclerosis (ALS) caused by mutations in the superoxide dismutase 1 (SOD1) gene. In ALS patients with . . .
Asim Beg, assistant professor at University of Michigan in Ann Arbor, was awarded an MDA research grant totaling $300,000 over a period of three years to study the role of a protein, EphA4, in amyotrophic lateral sclerosis (ALS). High levels of EphA4 correlate with rapid disease progression in ALS patients. Beg and colleagues will work . . .
Patients, their families and caregivers, researchers and clinicians are invited to gain insight into the testing process for experimental therapies to treat amyotrophic lateral sclerosis (ALS) via a live webcast this month. The ALS Clinical Trials Guidelines 2016 Workshop, an international effort that seeks to renew and update the current ALS Clinical Trials Guidelines, will . . .
Researchers are looking for people with amyotrophic lateral sclerosis (ALS) to participate in a phase 1 clinical trial, sponsored by Biogen and Ionis Pharmaceuticals, to test the experimental drug BIIB067 (Ionis-SOD1Rx). BIIB067 is an antisense oligonucleotide, composed of short segments of synthetic genetic material (nucleic acid) that bind to RNA. The drug is designed to . . .
Kevin Clay is going to the Super Bowl. A Carolina Panthers superfan, he will be in California this weekend to cheer on his beloved team. The opportunity to see the big game in person is, as Kevin says, “a dream come true.” But the trip to Levi’s Stadium in Santa Clara, Calif., is particularly meaningful . . .
Researchers are looking for people with amyotrophic lateral sclerosis (ALS) to participate in the phase 3 VITALITY-ALS clinical trial, sponsored by Cytokinetics, to test the experimental drug tirasemtiv. Tirasemtiv is a skeletal muscle activator that is designed to increase the sensitivity of muscle fibers to calcium, which should cause these fibers to contract even if . . .