MD STARnet

Since 2001, the MD CARE Act has had a tremendously positive impact on MD research — but its reauthorization this year will require active outreach

posted on February 14, 2013 - 11:31am
Note: The MD CARE Act is a critical part of the historic effort to find cures for muscular dystrophies. Watch for articles in the coming weeks that delve further into the remarkable progress attributable to this important legislation.

New survey shows average of 2.5 years elapse between symptom onset and diagnosis of DMD

posted on September 7, 2009 - 9:00pm
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.
posted on November 1, 2008 - 10:07am
QUEST Vol. 15, No. 6
As the 110th Congress drew to a close this fall, a tremendous victory emerged for people with muscular dystrophy: the reauthorization of the MD-CARE Act. The Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education (MD-CARE) Amendments of 2008 updates the 2001 law that coordinates and focuses federal research on different forms of muscular dystrophy, collects...
posted on September 1, 2005 - 3:03pm
QUEST Vol. 12, No. 5
In this article, the latest news on clinical trials in: weight and nutrition * Heart changes in FSH dystrophy * heart problems in Duchenne MD * siblings' similarities in MMD * myotonia congenita * late-onset Pompe's disease * parents' input