A research study of the use of the CoughAssist machine is open to children and teens with Ullrich congenital muscular dystrophy or Bethlem myopathy
Children and adolescents with Ullrich congenital muscular dystrophy or Bethlem myopathy are invited to participate in a study of a daily breathing treatment regimen using a brand-name device called a CoughAssist.
Investigators conducting an online survey to gather information from people with inclusion-body myositis report early results and ask a few more questions
Investigators conducting an online survey launched in January 2013 to gather anonymous information from people with inclusion-body myositis (IBM) are now reporting preliminary results and are asking the original respondents to complete a short supplementary survey.
Neurologist Katherine Mathews discusses cardiac, respiratory and other concerns for people with limb-girdle muscular dystrophy
Neurologist Katherine Mathews
Katherine Mathews, M.D., is a neurologist at the University of Iowa Hospitals & Clinics in Iowa City, where she co-directs the MDA clinic. She serves on MDA's Medical Advisory Committee. Below she discusses limb-girdle muscular dystrophy with MDA Medical and Science Editor Margaret Wahl.
A nurse and genetic counselor, Trout discusses the diagnostic process and how she helps families with education and support
Nurse Christina Trout
Christina Trout is an advanced practice nurse specializing in pediatric neuromuscular disorders and genetic nursing. She's been providing genetic counseling, as well as general education and care coordination, to families with neuromuscular disorders at the University of Iowa since 1993.
The daylong, MDA-supported conference held Aug. 24, 2013, focused on all aspects of Becker muscular dystrophy; videos are now online
The 2013 MDA-supported Becker Muscular Dystrophy Conference, held Aug. 24 in Baltimore and co-hosted by MDA and Johns Hopkins Medicine, was "high-energy" with "phenomenal" presenters, says Annie Kennedy, MDA's senior vice president of advocacy, who attended and helped organize the meeting.
Some 130 people attended in person and many more, including some from outside the United States, attended...
The annual BMD conference, held in Baltimore and streamed live online, is centered on the theme ‘optimizing the lived experience of BMD’
MDA and John Hopkins Medicine will present the 2013 national Becker Muscular Dystrophy Conference Saturday, August 24, in Baltimore. Free to all participants with BMD and their family and friends, the conference can be attended in person or online.
MDA grant will support a study of prednisone in 25 boys with Duchenne muscular dystrophy who are less than 2½ years old
Pediatric neurologist Anne Connolly has received an MDA grant to study the effects of prednisone on Duchenne muscular dystrophy in very young children.
MDA has awarded a grant to Anne Connolly, a pediatric neurologist at Washington University in St.