An expression of the live unlimited spirit, stories and voices of the MDA community
Spring 2018 has been an exceptionally busy time for National Ambassador Justin Moy. After being named 2018 MDA National Ambassador in March, Justin traveled to Japan with members of his school (with his MDA Camp Counselor serving as his care attendant). He also had several artistic endeavors this spring, exhibiting his artwork at a local . . .
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 . . .
Researchers at Amicus Therapeutics are looking for participants with late-onset Pompe disease who are being treated with enzyme replacement therapy (ERT) to participate in an observational study. The study is designed to help researchers evaluate the change in muscle function and respiratory endpoints over approximately nine to 12 months. During that time, participants will have . . .
Researchers are looking for people with myasthenia gravis (MG) to participate in a phase 3 clinical trial to evaluate the safety and effectiveness of the investigational drug amifampridine phosphate (brand name Firdapse). Effects of the drug will be assessed in individuals with muscle-specific kinase (MuSK) antibody positive MG and in a smaller group with acetylcholine . . .
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 . . .
Researchers are looking for people with Charcot-Marie-Tooth disease (CMT) to participate in a phase 2 clinical trial to evaluate the safety and effectiveness of the investigational drug FLX-787-ODT. FLX-787-ODT, under development by Flex Pharma, is taken in tablet form and is designed to reduce muscle cramps in adults with CMT. Trial length is approximately three . . .
Researchers are looking for people with myasthenia gravis (MG) to participate in a multinational phase 2A clinical trial to evaluate the safety, tolerability and effectiveness of the investigational drug UCB7665. UCB7665, under development by UCB Pharma, is administered via subcutaneous (under-the-skin) injection and is designed to reduce the severity of muscle weakness and fatigue in . . .
On May 11, your daily cup of coffee can boost more than your energy — it can also bolster MDA’s quest to end ALS. For 12 years, Dutch Bros. Coffee has supported MDA through Drink One for Dane Day, a fundraiser launched in 2007 in honor of Dutch Bros. co-founder Dane Boersma, who was diagnosed . . .
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 . . .
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