posted on April 9, 2012 - 12:00pm
The MDA Transitions Center Accessible Spaces Gallery encourages you to share your story and photos illustrating a living area you’ve customized and made more "you friendly."
posted on January 1, 2012 - 12:14pm
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...
posted on October 1, 2011 - 10:37am
In the recent National Transitions Survey conducted by MDA of our young adult and adult communities, 40 percent of respondents said their daily physical care assistance was provided by family caregivers; 41 percent indicated the majority of their transportation needs are met by a parent, spouse or family caregiver; and 26 percent included family financial support among their primary sources of...
posted on July 1, 2011 - 1:57pm
Thanks to improvements in diagnostic and clinical care, there’s a new population of people in the world: adults with “pediatric” muscle diseases.
MDA is committed to ensuring bright futures for all our children with neuromuscular diseases who will someday “transition” into adults with a different set of needs than they had as children.
posted on March 31, 2011 - 9:01am
Did you know that each of the more than 40 neuromuscular disorders covered by MDA is considered a “rare disease” because each affects fewer than 200,000 people in the United States?
posted on January 1, 2011 - 3:29pm
Like it or not, some members of the MDA community will soon be trying out Medicare’s competitive acquisition program for “durable medical equipment, prosthetics, orthotics and supplies” (DMEPOS). The controversial program goes into effect in nine regions of the country this month.
posted on October 1, 2010 - 3:25pm
“There are four kinds of people: those who are caregivers, those who have been caregivers, those who will be caregivers, and those who will need a caregiver.” ~ Rosalynn Carter
While the month of November is recognized as National Family Caregivers Month, a salute to caregivers is warranted all 12 months of each year.
posted on July 1, 2010 - 5:30pm
There’s an event that happens frequently in Washington, D.C., known as the “Fly In.” Members of a special interest group fly in from around the country and meet with their elected representatives on Capitol Hill. These meetings are extremely effective at heightening awareness of the group’s needs and building relationships with members of Congress.
posted on March 31, 2010 - 11:42am
Remember your elementary and middle school years? How often did adults ask you what you wanted to be when you grew up or where you wanted to go to college? These early educational years are the perfect time to plant seeds of self-purpose and self-advocacy.
posted on December 31, 2009 - 1:14am
As you make your list of 2010 New Year’s resolutions, here are some items worth adding:I resolve to let my elected officials know what issues matter to me...
With health reform discussions winding down, Congress soon will turn its attention to an extensive backlog of legislative matters. We want the issues that matter to the MDA community to be at the forefront of elected leaders’ agendas. To see...
