Research

posted on January 13, 2015 - 3:36pm
Boys with Duchenne muscular dystrophy (DMD) caused by specific genetic mutations who were treated with the experimental drug eteplirsen for 168 weeks (3.2 years) continued to show an advantage in the distance they were able to walk compared to those treated with the drug for only 144 weeks (2.8 years), although all boys had declined in walking distance since the start of this phase 2b trial of...
posted on January 7, 2015 - 12:06pm
Ever wondered how someone with a neuromuscular disorder in his or her family might contribute to research efforts in this field?
posted on January 5, 2015 - 9:25am
When Lizzie Chamberlain of Jacksonville, Ill., was 2 years old, her physical development relative to other children began to plateau — and then decline. Lizzie received a diagnosis of type 3 spinal muscular atrophy (SMA). 
posted on January 5, 2015 - 9:23am
Considering the title of this column, From Where I Sit, I’m surprised more people have not written about butts. After all, for those of us wheeling around at a seated height — I live with type 2 spinal muscular atrophy (SMA) — other people’s butts are often what we see from where we sit. 
posted on January 5, 2015 - 9:21am
Even a quick search online will turn up all manner of white papers, analyses and studies that identify a higher risk of anxiety and depression among individuals living with chronic disease and physical disabilities — such as those associated with many types of neuromuscular disease.  
posted on January 5, 2015 - 9:19am
It is not breaking news to people with neuromuscular disease that combating pain can be a substantial part of daily life. Unfortunately, chronic pain is a complex symptom to manage, and it may be far more pervasive in neuromuscular diseases than originally thought.  “When I started out, about 25 years ago now, there was nothing,” says Gregory Carter, a doctor who specializes in physical...
posted on January 5, 2015 - 9:17am
Through MDA’s Team Momentum program, participants in endurance races (marathons and half marathons) around the county help raise money to fight muscle disease. These participants receive world-class training, team camaraderie and support for their races, as well as tips and resources for fundraising.  In its inaugural year, 2014, Team Momentum and its dedicated participants enjoyed great...
posted on January 5, 2015 - 9:15am
Any health professional will tell you that good nutrition is a key to living well with and managing a neuromuscular disease. But what if the disease itself makes that goal hard to reach? That’s the all-too-common challenge many people with neuromuscular disorders face.