Today, MDA, supported by grants from VieMed Healthcare and SYNERGY HomeCare, has released the MDA Guide for Caregivers, a comprehensive resource to empower individuals living with neuromuscular disease and their caregivers. The guide provides practical advice, recommendations, tips and resources to maximize quality of life, drawing on the expertise of numerous MDA Care Center staff. . . .
Whenever Paul Robertson and his Fishing for Muscular Dystrophy (FFMD) team pull into a truck stop, they know it might be a while before they are able to leave. Although there to pump fuel, the caravan of trucks and boats adorned with the FFMD and MDA logos are such a big hit with fellow motorists . . .
Ryan Farnsworth, 31, is passionate about spreading a positive message to others going through a tough time. Since receiving an ALS diagnosis in 2015, Ryan has made a conscious effort to maximize every moment of every day. As he has grown weaker, he has become even more determined to make a lasting impact on the . . .
Since his call-up to the Philadelphia Phillies in August 2017, Rhys Hoskins has taken Major League Baseball by storm. A prolific hitter, Rhys burst onto the scene late last summer with a home run barrage that made national news and shattered rookie records along the way. In just 10 months he has become the face . . .
In 2007, Karen Toennis received an unexpected phone call. On the other end of the line was Dr. Stanley Appel, the neurologist who cared for Karen’s husband, Mike, during his 13-year battle with ALS. They had not spoken since Mike’s passing the year before, but Dr. Appel had a question for Karen. “At first I’m . . .
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…
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…
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, . . .
Last week, I had the opportunity to attend the 2018 MDA Clinical Conference in Arlington, Va., to write about it from the patient’s perspective. I am always excited to attend conferences that bring together stakeholders in the neuromuscular disease community. I love meeting fellow patients, and I especially love learning about the latest scientific and . . .