Harmony Biosciences Holdings Inc, makers of WAKIX, announced winners of the Patient at the Heart and Progress at the Heart programs.
The Patients at the Heart program was created in 2019, and awards funds to not-for-profit organizations working to support and address the challenges of people living with sleep disorders and rare diseases who experience excessive daytime sleepiness (EDS). Initiated in 2021, Progress at the Heart supports innovative programs that address disparities, injustice, and inequities in the rare disease and sleep disorder community.
“We are so inspired by the diverse and inventive programs submitted for this year’s Patients and Progress at the Heart programs,” says Cate McCanless, SVP, corporate affairs and public policy, in a release. “Our goal is to improve the lives of people living with sleep disorders and their families, and we hope by supporting these cutting-edge programs, we can make a positive difference for these communities.”
The company chose to announce the winners on World Narcolepsy Day, a day dedicated to raising awareness for this sleep disorder globally. The first Patients at the Heart program awarded $65,000 to four organizations, which was increased to $74,000 in 2020. Now, combined with the Progress at the Heart recipients, total funds awarded in 2021 increased to over $180,000 awarded to eight organizations across the United States.
The following organizations, by category, were chosen as the 2021 Patients at the Heart recipients:
- ANGEL Aid:
Narcolepsy Caregivers Retreat
The grant will allow the creation of a six-week virtual Caregivers Wellness Retreat with a focus on mental health, self-care, and connection for up to 25 caregivers of people with narcolepsy.
Who Am I? Graphic Novel Workshop
The funds will aid creation of an art-therapy program designed to foster emotional life skills, self-awareness and a sense of connection for people living with narcolepsy and/or EDS.
Rare Diseases with EDS
- Prader-Willi Syndrome Association | USA: Disordered Sleep: A Deep Dive for Parents and Practitioners
Funds to foster creation of free and accessible tools and resources informed by focus groups and PWS sleep best practices, as well as a PWSA | USA Virtual Sleep Summit.
The following organizations and programs were chosen as the 2021 Progress at the Heart recipients:
- Community Health Clinic: Enhancing Sleep Health Awareness Among Chicago’s Medically Underserved Population
This project will provide educational materials about sleep health and various sleep disorders to the target population at Community Health Clinic (CHC), which primarily includes patients from Spanish and Polish-speaking communities, whose annual income is at or below 100% of the Federal Poverty Line. Additionally, this project provides the framework and platform upon which to create and disseminate educational materials that are applicable for similar clinics serving low-income communities across Chicago.
- Duke Department of Neurology: Duke Health Disparities in Neurology Scorecard
The grant was awarded for the creation of the Duke Racial Disparities in Neurology Scorecard, inspired by the White Coats for Black Lives Racial Justice Scorecard for medical schools. A calculator will be published electronically that will aid other neurology departments across the country to create their own scorecards.
- Florida Sickle Cell Center: CRiSIS (Circadian Rhythm & Sleep Impact on Sickle Cell)
An initiative to investigate the sleep quality of patients living with Sickle Cell Disease (SCD). The objective of this program is to better understand the sleep quality of people living with SCD and how their sleep quality may be contributing to or exacerbating their underlying condition.
- Project Sleep: Focus Groups to Understand Barriers and Improve Sleep Disorders Awareness, Diagnosis, and Treatment in Black American Communities
This project aims to uncover important insights by conducting focus groups to better understand the first-hand perspectives of Black Americans, healthcare providers, and trusted community leaders. The findings will help to inform future awareness and education campaigns aiming to reduce delays to diagnosis and treatment of sleep disorders in underserved communities.
- The Hypersomnia Foundation (HF): Diversity, Equity, and Inclusion (DEI) Initiative
The DEI Initiative is focused on understanding and identifying the challenges people of diverse backgrounds may face when they need healthcare for EDS and other symptoms of sleep disorders. With a five-step program, led by a DEI Task Force, HF plans to hold listening sessions in the community as first steps.
- The Sleep Doctor: Bio-Rhythm Program
A behavioral health intervention designed to promote weight loss through using Fitbit technology to monitor circadian rhythm and coach participants to maintain proper sleep, nutrition, and activity habits. This program will help to educate and monitor participants from underserved Hispanic communities in El Paso, TX to address the high prevalence of sleep disorders contributing to obesity.