Three organizations awarded more than $74,000 in grants to support programs that help address unmet needs in the narcolepsy community during COVID-19
PLYMOUTH MEETING, PA and CHICAGO, IL, September 22, 2020 — Harmony Biosciences Holdings, Inc. ("Harmony") (Nasdaq: HRMY), a pharmaceutical company dedicated to developing and commercializing innovative therapies for patients living with rare neurological disorders who have unmet medical needs, today announced recipients of the second-annual Patients at the Heart Grant in recognition of World Narcolepsy Day. The Patients at the Heart Grant was originally designed as an annual competitive grant opportunity dedicated to funding innovative patient-centric programs; however, this year’s grants were specifically awarded to programs created to support and address the unique challenges of people living with narcolepsy during the COVID-19 pandemic.
"We are proud to recognize the second-annual World Narcolepsy Day by continuing to support the narcolepsy community, especially during a year when all of us need support more than ever," said Cate McCanless, Harmony’s Vice President, External Affairs. "Being able to pivot our Patients at the Heart Grant opportunity to fund programs that support and address the challenges of people with narcolepsy during the COVID-19 pandemic underlines our commitment to keeping patients at the heart of everything we do."
World Narcolepsy Day, which takes place on September 22, is a day dedicated to raising awareness of narcolepsy on a global scale. In 2020, the day is co-led by 26 patient advocacy organizations across six continents.
The grant program awarded $65,000 to four organizations in 2019, a figure which this year rose to $74,000 awarded to three organizations. The following organizations were selected as grant recipients:
Wake Up Narcolepsy (WUN)
Program: Unique Digital Resource Collection
These funds enabled the development of the 'Doing Life During COVID' page of the Wake Up Narcolepsy website. This page includes links to free and affordable resources on healthy eating, working from home, homeschooling, exercise apps, meditation and mental health resources, access to key areas of support and relevant organizations and more.
Program: Digital Support Groups
WUN offers free, targeted online support groups to individuals with narcolepsy and their families, world-wide. Programs are designed to bring together individuals who have been affected by the diagnosis of narcolepsy and provide the support and community necessary to thrive. These funds were used to aid the expansion of digital support groups due to the demand for online programming during COVID-19.
Program: Rising Voices of Narcolepsy (RVN)
Rising Voices of Narcolepsy, Project Sleep’s leadership training program, helps people with narcolepsy share their story more effectively through writing and speaking. This online program empowers participants while fostering a new generation of narcolepsy advocates spreading awareness. In the wake of COVID-19, this program saw a significant increase in interested participants. Given its existing online format, this grant will enhance the program by providing more frequent opportunities for trained speakers and writers to share their story and offering additional support tools to help them adapt to the demands of a virtual presentation environment.
Program: Narcolepsy Awareness Program (NAP)
The NAP aims to reduce both self-stigma and societal stigma by providing people with narcolepsy with the leadership, role modeling, and information to feel hope, inspiration, connection and empowerment to succeed with narcolepsy. The grant was used to produce a new article and video series featuring health care professionals from the narcolepsy community and additional live broadcast interviews with key narcolepsy and sleep experts.
Program: Children’s Outreach by Narcolepsy Network Educate, Connect, Thrive (CONNECT)
Narcolepsy Network established the CONNECT program for youth that aims to address the needs and impact of COVID-19 on children and their parents affected by narcolepsy within the ages of 8-13 years old. The program will also aim to connect the community virtually to minimize the sense of seclusion fostered by COVID-19, as well as promote advocacy within the community by inviting a diverse audience and guest speakers.
Program: Cooking Connects
This webinar series will promote healthy eating for people with narcolepsy and their families and foster a sense of community during virtual times.
Program: Narcolepsy Access Project (NAP)
Due to COVID-19, Narcolepsy Network suspended their dozens of in-person support groups and utilized this grant to host virtual support group meetings.
Narcolepsy is a rare, chronic, debilitating neurologic disorder of sleep-wake state instability that impacts up to 165,000 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.
About Harmony Biosciences
Harmony Biosciences is a pharmaceutical company headquartered in Plymouth Meeting, PA and Chicago, IL. The company was established in October 2017 by Paragon Biosciences, LLC, with a vision to provide novel treatment options for people living with rare, neurological disorders who have unmet medical needs.
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