I strongly encourage the parents of children with SCLS, or young adults who were diagnosed with SCLS before they turned 18 years old, to participate in a first-of-a-kind research survey of their experiences coping with this condition.

Its purpose is to document how young SCLS patients and their families have managed the various challenges of living with this rare disease – to learn about their experiences, challenges, and perspectives, so that future research and pediatric care can better address the needs of other young patients and their caregivers.

The survey is voluntary and anonymous, and there are no “right” or “wrong” answers.

It was designed and is managed by Dr. Richard Pierce, a professor and pediatric intensive-care physician at the Yale University School of Medicine who is dedicating his life to researching SCLS in children, with the blessing and cooperation of the legendary Dr. Kirk Druey, formerly with NIH, and other clinicians and researchers in the United States and Europe.

The survey was prepared with my input and collaboration, and it was duly approved by Yale University’s authorities.

If you are not a parent or legal guardian of a child with SCLS but know of another family or individual for whom this survey is relevant, please share this message with them.     

The survey can be accessed at this link: https://yalesurvey.ca1.qualtrics.com/jfe/form/SV_85Ggf4cYedkpRe6