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:
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.
Expert information about higher education, living independently at college and employment is available in upcoming MDA webinars for young adults with neuromuscular diseases
Update (Aug. 22, 2012) — Links have been added to the archived versions of each webinar.
MDA’s public webinar series has a host of offerings in August for young adults with neuromuscular diseases who are interested in higher education and employment.
Having a disability doesn’t mean you can’t find the love of your life; young adults with neuromuscular disease share their stories and advice
If you have limited movement, how do you make the first move on a date? Is it OK to bring a personal care attendant on a date? At what point would you let a "significant other" provide personal care for you?
On a beautiful autumn day in September, six accomplished adults came to Washington, D.C., representing the voice and experience of hundreds of others who share the common experience of being adults living with “pediatric-onset” neuromuscular disorders.
“We were the generation that was hoped for — and now we’re here,” said Vance Taylor, 33, a homeland security consultant from Washington, D.C., who...
Quest shares lessons from parents who have successfully helped their children with muscle diseases grow into self-reliant adults
When Vance Taylor was a boy, he didn’t know any adult he could look to and say, “There’s somebody like me.”
His mother, Morena Noyes, recalls the first time she took Vance and his sister Kathy — both of whom have limb-girdle muscular dystrophy — to MDA summer camp.
“We were still in the parking lot, in our Astro van,” Noyes says. “Vance looked, and then he turned to his sister and said, ‘Kathy,...
Get those cameras ready! MDA is seeking Make-a-Muscle pix and photos of accessibility makeovers
This summer, MDA is inviting everyone to participate in its new "Make a Muscle, Make a Difference" public awareness campaign by submitting photos of friends and family flexing their muscles for MDA.
MDA also is seeking photos for its "Accessible Spaces Gallery" debuting in August on the MDA Transitions Resource Center, a website designed to help young people with muscle diseases make the...