Parent Project Muscular Dystrophy (PPMD) fights to end Duchenne. We accelerate research, raise our voices to impact policy, demand optimal care for every single family, and strive to ensure access to approved therapies. PPMD is proud to have played a vital role in every single victory against Duchenne since 1994 and our compassion, strength, and innovation continue to lead this community.
PPMD was a member of the National Task Force for Early Identification of Childhood Neuromuscular Disorders, which convened in 2009 to address the delay that families frequently experience between symptom onset and diagnosis of neuromuscular disorders. The Task Force aimed to increase clinicians’ awareness of peripheral neuromuscular disease as a cause of developmental delay in young children, and to help providers in primary care, rehabilitation medicine, and physical therapy identify the early symptoms of neuromuscular disorders.
ChildMuscleWeakness.org is the culminating work of the National Task Force for Early Identification of Childhood Neuromuscular Disorders. The website provides education about recognizing the signs of motor delay and providing the appropriate evaluation and testing. Additional resources include a helpful Motor Delay Algorithm, an extensive Video Library, and Materials for Families.
Remember, if you see developmental delay, order a CK!
If Duchenne Muscular Dystrophy is suspected based on clinical features and/or an elevated CK, PPMD provides free genetic testing through our Decode Duchenne program. The program provides free diagnostic and carrier testing for families living in the United States and Canada.