22 Sep Harmony Biosciences Announces Recipients of 2019 Patients at the Heart Grant in Recognition of World Narcolepsy Day
Four organizations will receive grants totaling $65,000 to support programs
that help address unmet needs of the narcolepsy community
PLYMOUTH MEETING, PA, September 20, 2019 — Harmony Biosciences, LLC (Harmony) announced today the recipients of the inaugural Patients at the Heart Grant, a competitive grant opportunity to fund innovative, patient-centric programs for the narcolepsy community. Applicants were asked to submit proposals describing the goals of their program and how it will benefit people living with narcolepsy, as well as an evaluation plan with measurable indicators of success.
The original 2019 grant award was $50,000, but following the review of each application, the Patients at the Heart Grant review committee selected four organizations to receive grants totaling $65,000. The review committee was comprised of a diverse group of experts including cross-functional Harmony executives, a healthcare professional specializing in sleep disorders medicine and research, and a person living with narcolepsy. The following organizations were selected as grant recipients:
Program: Grant funds will support the “Advancing the Front Line” program, which will educate healthcare providers that see K-12 and college-age patients and provide them with a fundamental awareness of the existence, symptoms and challenges presented by disorders of hypersomnolence.
Northwestern University, Department of Neurology, Behavioral Sleep Medicine Lab
Program: Grant funds will support the design and development of a mobile application for people living with narcolepsy. The application will help users record and track medical data related to their disorder, send notifications to improve adherence to structured schedules, provide cognitive-behavioral techniques to manage symptoms, and more.
Program: Grant funds will be used to extend a summer camp program for children with narcolepsy to a week-long experience, so children can meet other children facing similar challenges and participate in camp activities under medical supervision.
Northwest Narcolepsy Support Group
Program: Grant funds will ensure meeting resources, educational events and community experiences remain free of charge for the group’s 160 members.
“Our goal is to improve the lives of people living with narcolepsy and their families, and we hope by supporting innovative programs, we can make a positive difference for this community,” said Cate McCanless, Harmony’s Vice President, External Affairs. “As we approach World Narcolepsy Day, we are thrilled by the enthusiasm the Patients at the Heart Grant received in its first year, and are looking forward to seeing these organizations’ programs come to life at the local and national level.”
Grant recipients were selected in recognition of the first-ever World Narcolepsy Day, which takes place on September 22, 2019. The awareness day will help increase education about narcolepsy and raise awareness for related patient and advocacy programs across the globe.
Narcolepsy is a rare, chronic, debilitating neurologic disorder of sleep-wake state instability that impacts up to 200,000 Americans and is primarily characterized by excessive daytime sleepiness (EDS) and cataplexy – its two cardinal symptoms – along with other manifestations of REM sleep dysregulation, which intrude into wakefulness. EDS is the inability to stay awake and alert during the day and is the symptom that is present in all people living with narcolepsy. In most patients, narcolepsy is caused by the loss of hypocretin, a neuropeptide in the brain that supports sleep-wake state stability. This disorder affects men and women equally, with typical symptom onset in adolescence or young adulthood; however, it can take up to a decade to be properly diagnosed.
Harmony Biosciences, LLC
Harmony Biosciences, LLC is a private biopharmaceutical company headquartered in Plymouth Meeting, PA. The company was established in October 2017 with a vision to provide novel treatment options for people living with rare and orphan diseases, with an emphasis on central nervous system disorders, starting with patients living with narcolepsy. Harmony is committed to advancing the understanding of narcolepsy and providing information and resources to individuals who live with, and healthcare professionals who treat patients with, this disorder. For more information on Harmony Biosciences, visit www.harmonybiosciences.com.