May 25 2022
Wake Up Narcolepsy helps fund new narcolepsy screening tool for children
h in News
Wake Up Narcolepsy—a nonprofit organization dedicated to fostering Narcolepsy awareness, education and research toward improved treatments and a cure—is proud to support the development and dissemination of a new diagnostic screening tool designed to identify symptom onset in children.
Developed and validated in 2021 by a group of researchers led by Dr. Kiran Maski, Department of Neurology at Boston Children’s Hospital, the Pediatric Hypersomnolence Survey (PHS) is a survey that seeks the participation of clinical health providers, school professionals and concerned family members. The PHS is designed to improve early identification of narcolepsy (type 1 and type 2) and idiopathic hypersomnia (IH) among children and adolescents ages 8 – 18 years who are in need of further evaluation, testing and diagnosis.
Central Nervous System Disorders of Hypersomnolence are chronic neurological sleep disorders characterized by severe daytime sleepiness, memory loss, poor concentration, and automatic behaviors that affect social and family relationships, academic performance, professional success and leisure activities.
The Coverys Community Healthcare Foundation funded the validation of the PHS through Wake Up Narcolepsy (WUN). The American Academy of Sleep Medicine also provided grant funding for this project.
“I am incredibly grateful for the support of Wake Up Narcolepsy, our wonderful research participants and our dedicated research staff that make this work possible,” states Kiran Maski, MD, MPH, Assistant Professor of Neurology, Harvard Medical School, Boston Children’s Hospital. “We hope this survey can help triage kids and teens with narcolepsy or idiopathic hypersomnia more directly to sleep-medicine providers for timely diagnosis.”
“It often takes 6-8 years or longer to accurately diagnose a person with narcolepsy. The PHS is a critical new screening tool that we hope will aid in shortening the diagnosis period for children suffering with narcolepsy” states Monica Gow, Founder and Executive Director, Wake Up Narcolepsy. The survey can be found here: https://bit.ly/WUN_PHS.
About Wake Up Narcolepsy
Established in 2008, Wake Up Narcolepsy, Inc. (WUN) is an international 501c3 not for profit organization based in Massachusetts. WUN’s mission is to accelerate narcolepsy research, increase awareness to reduce lag time between symptom onset and diagnosis of narcolepsy, and provide educational and supportive services to people in the narcolepsy community.
About the Coverys Community Healthcare Foundation, Inc.
The Coverys Community Healthcare Foundation, Inc. provides grant funding and donations to organizations and innovative programs that improve patient care and safety, promote healthy lifestyles, and support individuals and organizations providing healthcare services. The development of the Foundation exemplifies Coverys’ dedication to being an affirmative and active corporate citizen in the healthcare community and the communities in which it operates.