As First Vice-President of the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM), I have the privilege of writing the editorial for the September issue of Developmental Medicine & Child Neurology (DMCN) which coincides with the annual meeting of the Academy. My interest in spinal muscular atrophy (SMA) and children with disabilities was spurred by one patient, whom I met early in my career at Newington Children's Hospital, Connecticut, USA. Although DMCN has not published many articles on the subject of SMA in the past 10 years (8 of 1389 articles), I would like to take this opportunity to discuss my experience of this condition. This autosomal recessive disease, of which our knowledge has changed greatly over the past 30 years, is the second most common recessive disease in infancy and childhood.