In 2017, the Bryan, Texas, fire department raised a personal record of $42,000 Filling the Boot for MDA. But fundraising is just one of many ways the Bryan fire fighters have positively impacted the lives of MDA families. Their commitment to MDA, which goes back more than 30 years, has expanded significantly since Daniel Buford joined the department five years ago. Daniel, who is the president of IAFF Local 1204 in Bryan, has reinvigorated the fire department’s volunteer efforts and found news ways to engage with the local MDA community…
Ches Hutchinson began his MDA volunteer journey with a long walk.
In 2011, a coworker whose son attended the Minnesota MDA Summer Camp reached out to Ches. The camp was in need of volunteers — specifically men — and Ches’ little brother had just graduated from high school. Might he be interested, Ches’ coworker asked?
In March, as Daytona Bike Week 2018 neared, Patty Dietering, human resource executive team leader for the Port Orange, Fla., Target, gathered her teams. Their mission: partner with MDA and Harley-Davidson Motor Co. to raise awareness of MDA and fundraise to continue the fight to end muscular dystrophy, ALS and related life-threatening diseases. Patty manages all volunteer activity for her Target store; in 2017, her team contributed 2,218 hours of volunteer service toward multiple agencies…
If you have ever participated in an MDA Muscle Walk event in Southern California, chances are you have encountered Mike Wernet of San Juan Capistrano. The retired auto mechanic is a mainstay at Muscle Walks throughout the region, having been inspired to volunteer ever since being diagnosed with mitochondrial myopathy in 1996 at the age of 46. Now 67, Mike and his family participate in as many as four walks per year. He has found it a great way to give back to an organization that has played an integral role in not just his own life but also the lives of others…
From April 16 to 20, we’re celebrating National Volunteer Week! We’re so thankful for our MDA volunteers who give of their time and talents to help families with muscular dystrophy, ALS and related diseases. If you’re an MDA volunteer, consider this your virtual hug from us! If you’d like to become a volunteer, we’d love . . .
In 2015, Illinois native Rob Besecker hiked to the base camp of Mount Everest, an impressive physical feat that only a few thousand achieve in a given year. Reaching this campsite 17,500 feet above sea level is a grueling challenge that requires weeks of hiking through rough terrain and thin air. Yet for Rob, 43, . . .
A phase 1 trial to test omigapil in congenital muscular dystrophy (CMD) conducted at the National Institutes of Health is complete and data indicate it met its primary objective. Results from the trial, also known as CALLISTO, show a favorable pharmacokinetic profile of omigapil and demonstrated that the drug was safe and well-tolerated in children and . . .
Catalyst Pharmaceuticals has submitted a New Drug Application (NDA) to the U.S. Food and Drug Administration (FDA) for the investigational drug amifampridine phosphate (brand name Firdapse) for the treatment of people with Lambert-Eaton myasthenic syndrome (LEMS). The FDA has 60 days to determine whether the NDA is complete and acceptable for filing. If the FDA . . .
The Tuesday afternoon sessions of MDA’s 2018 Clinical Conference focused on best practices in newborn screening. Augmentative communication, pediatric-to-adult transition, respiratory health and care coordination also were covered in parallel sessions. Among the highlights: Newborn screening R. Rodney Howell, M.D., from the Miller School of Medicine, University of Miami, talked about the history of newborn . . .
On Tuesday morning, MDA’s 2018 Clinical Conference sessions focused on best practices in cardiac care, physical therapy, bone health, technology and nutrition. Among the highlights: Cardiac management for the muscular dystrophy lifespan Elizabeth McNally, M.D., Ph.D., from Northwestern University Feinberg School of Medicine, noted that to best manage the heart in neuromuscular disease, a genetic . . .