Thank You

Muscular dystrophy is the general name to given to over 40 different neuromuscular diseases.  The Danny Foundation is focused on only one:  Duchenne muscular dystrophy.  Duchenne muscular dystrophy (DMD) is a progressive muscle wasting disease that causes loss of muscle function and independence.  DMD is the most common and most lethal genetic disorder diagnosed during early childhood.  While most cases are inherited genetically from a faulty gene, approximately 35% of new cases are spontaneous gene mutations.  Every year about 20,000 (or 1 out of every 3,500) boys throughout the world are born with DMD.  DMD is caused by a faulty gene on the X chromosome that makes dystrophin, a protein that hold muscles together. 

Boys are usually diagnosed with DMD by the age of six (Danny was five).  The diagnosis can be delayed because parents and doctors will sometimes miss the signs of muscle weakness which include problems with stair climbing, running, jumping and most other physical activities.  Most boys lose the ability to walk around the ages of 10-14 (Danny was nine) and by their late teens will lose much of their upper body strength.  Eventually, the lung muscles weaken which causes the need for assisted ventilation.  The heart muscles will also weaken over time leading to dilated cardiomyopathy, a condition involving weakness of the heart muscle.  Young men frequently lose their battle with DMD by the time they reach their late 20s.  When Danny was first diagnosed, boys did not typically survive past their teens!  The use of various medications, such as steroids and cardiac medicines as well as a better understanding of pulmonary issues has made a huge impact on these young men.   Research is moving forward in leaps and bounds, however nothing has changed the ultimate survival rate since the gene was first found in 1986.  There is still no known cure or treatment for DMD.

Please visit Parent Project Muscular Dystrophy or the MDA websites for more in- depth information regarding DMD.