A special contribution by guest blogger Leslie Born “No degree, or training, or book, or conversation, could have ever prepared me to be the parent of a child with a disability.” – Amanda Griffith-Atkins These words ring so true that some days I can’...
A new study sheds light on the clinical characteristics of Schaaf-Yang Syndrome in adults. In addition to other important findings, the study suggests there is more overlap between PWS and Schaaf-Yang Syndrome than previously understood, and confirms...
With the input of experts and parent advocates from the SYS community, a research plan has been developed to guide and accelerate SYS research over the next 3 years. The plan includes a brief overview of the ‘current state of research,' highlights cu...
In 2014, when Emma Nelson was born, NICU staff told her parents, Kim and Justin, to prepare for the worst. But for the next two years, Emma had no diagnosis. Kim and Justin were directed from one specialist to the next trying to find answers to their...
