Advocacy is needed to pass amendments to this landmark bill that will expand muscular dystrophy research and health care efforts
Times have changed dramatically since 2001, thanks to the passage that year of the Muscular Dystrophy Community Assistance, Research and Education (MD CARE) Act — a bill designed to advance research and health care for all forms of muscular dystrophy. Among the changes:
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...
MDA advocacy efforts are focused on accelerating research advances and treatment discovery while expanding the resources available to those affected with the disease
Today, research discoveries are bringing us closer than ever to effective therapies for spinal muscular atrophy (SMA) and other neuromuscular diseases. Medical knowledge of neuromuscular disease is broadening, and children and adults with these diseases are living longer, fuller lives.
But significant challenges remain.
People with MD have an increased risk of falling and decreased ability to recover muscle after injury; these strategies and products can help in ice and snow
Winter can be a beautiful time of year — especially when you're inside under a warm blanket, drinking hot cocoa and looking out the window at the glistening white and the snow-coated branches. Unfortunately, most people have to carry out their daily lives regardless of slippery conditions.
Slipping and falling are hazards for everyone in winter weather, but for people with neuromuscular...
MDA is partnering with federal agencies and other groups serving youth with disabilities to break down barriers for young people transitioning from childhood to adulthood
Like many high school seniors, Drew is busy choosing a college and preparing for the big transition from life at home to life on a college campus. Unlike his peers, Drew has Duchenne muscular dystrophy.
CMMS Deshae Lott Ministries is accepting applications for quality-of-life grants and academic scholarships from people with disabilities; the next deadline is Nov. 1, 2012
A small nonprofit organization is offering limited grants for in-home care to people with physical disabilities. The next quality-of-life grant application deadline is November 1, 2012.
'If I have a voice, I’m going to use it' says Jonathan Porter, MDA’s Personal Achievement Award recipient for 2013
Jonathan Porter has a problem with the word limitation.
“Sure, people with muscular dystrophy have limitations,” he says, “but hey, everyone has limitations — whether you’re in a wheelchair or you’re too short or too skinny — we all have limitations. I say, don’t look at what you have as a limitation, look at it as who you are and get on with your life.”
It doesn’t take long to realize this...