Harmony Biosciences Holdings Inc selected recipients of the second-annual “Patients at the Heart Grant.” The Patients at the Heart Grant was originally designed as an annual competitive grant opportunity dedicated to funding innovative patient-centric programs. 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.
Cate McCanless, Harmony’s vice president, external affairs, says in a release, “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.”
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
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.