New survey shows average of 2.5 years elapse between symptom onset and diagnosis of DMD
A study that analyzed medical records from four U.S. states has found that the average time between symptom onset and diagnosis of Duchenne muscular dystrophy (DMD) is 2.5 years, an interval that hasn't changed in two decades.
This delay in identification postpones treatment that can slow the progression of the disease and results in lost opportunities for genetic counseling of parents.
MDA’s new “Fly Out” program brings together the MDA community and legislators home on recess
Thanks to a new communications effort by MDA’s Advocacy Department – the Fly Out -- members of Congress are getting to hear the concerns of the MDA community first-hand and on their home turf.
The MDA Fly Out, which has been taking place around the country throughout August, capitalizes on Congress’ annual recess when most legislators head to their home districts and meet with constituents,...
An Aug. 15-16 conference for families affected by CMD can be watched online
A conference for families affected by congenital muscular dystrophy (CMD) is taking place Saturday and Sunday, Aug. 15-16, 2009, at Children's Hospital of Philadelphia, under the sponsorship of Cure CMD.
The conference begins at 8:30 a.m. Eastern time and will be available through the Internet.
Physicians, scientists, advocates to discuss BMD in Boston
An MDA-supported conference for families and professionals interested in scientific, medical and social issues related to Becker muscular dystrophy (BMD) will take place Aug. 1, 2009, at Massachusetts General Hospital in Boston.
The one-day conference is free, but seating is limited and attendees must register by July 24.
The program features:
MDA Advocates help sway legislators drafting health care reform bill
Proposed legislation that would have eliminated a first-month purchase option for power wheelchairs provided by Medicare now has been reworked to retain this option for those who use complex Class 3 power wheelchairs.
MDA Vice President for Advocacy Annie Kennedy credited quick response by MDA advocates with helping sway the House of Representatives Tri-Committee on health care reform, which...
Power wheelchair users urged to speak up to preserve first-month purchase option
People who receive a power wheelchair through Medicare may lose the option to buy the chair immediately, under a proposed change to Medicare rules being considered by committees dealing with healthcare reform in the U.S. House of Representatives.
The proposed rule change would eliminate the first-month purchase option for power wheelchairs provided by Medicare, requiring all Medicare...
Who doesn’t love recess? Remember those school days … you sat at your desk with your feet dangling from your chair, dreaming of the moment when the teacher would let you and your friends go to recess? Rain or shine, you got a well-deserved break from your daily routine, and you made the most of every second of it.