The Patients at the Heart program, which launched in 2019, underscores Harmony’s commitment to support the needs of people affected by rare neurological diseases. Over the last four years, the program has awarded numerous nonprofit organizations that are working to support and address the challenges of people living with sleep disorders and rare neurological diseases who experience excessive daytime sleepiness (EDS).
In 2021, Harmony initiated the Progress at the Heart award program. This award funds innovative programs that address health disparities and inequities in rare neurological disease and sleep disorder communities. Combined with the Patients at the Heart awards, total funding for these two programs has now increased to $380,000 over the last four years.
“Combining empathy with innovation to improve the lives of people living with rare neurological diseases is a mission that drives everyone at Harmony Biosciences,” says Cate McCanless, chief corporate affairs officer, in a release. “This diverse group of organizations have each developed new and innovative patient-centric initiatives to help address the unique needs of people living with rare neurological diseases. We look forward to the positive impact these programs will create for patients, caregivers and communities.”
2022 Patients at the Heart Award Recipients
- Muscular Dystrophy Association: MDA Access Workshops: Access to Coverage
MDA Access Workshops are a self-paced community learning and support series focused on increasing community health literacy, empowerment, and self-advocacy. The funding will allow for the expansion of MDA Access Workshops and the addition of a new program, Access to Coverage, that will provide an overview of obtaining insurance coverage for medical equipment and assistive devices.
- Hypersomnia Foundation: #UNITE Beyond Sleepy – An Interactive Forum for Peer-to-Peer Relational Connections
Establishing the #UNITE program to foster peer-to-peer support for individuals with hypersomnia disorders to connect and share personal challenges.
- KLS Foundation: Strategic Communications for Awareness
Increasing outreach and communication with the Kleine-Levin Syndrome community to raise awareness of the condition, build community and support systems, and facilitate initial patient participation in medical studies. The group aims to complete these goals through the development of resources and support opportunities, website and social media updates, and improvements of their patient registry.
- Prader-Willi Syndrome Association | USA: Caregiver Retreat
This event will offer up to thirty parents/caregivers an opportunity to attend a three-day, two-night event providing parents/caregivers with new skills to provide care for their loved one with Prader-Willi syndrome and develop their own self-care practices, including meaningful in-person peer connections.
- PWN4PWN: TechSoup
Providing people living with narcolepsy or idiopathic hypersomnia six months of education in the form of webinars and forums in service to PWN4PWN’s advocacy mission.
2022 Progress at the Heart Award Recipients
- World Sleep Society: Ensuring Equity in the International Sleep Medicine Exam – An Inclusionary Imperative
The World Sleep Society Sleep Medicine Examination is designed to cover many aspects of sleep science, extant practice guidelines, diagnostic nosology, presentation and associated features of sleep disorders, epidemiology of sleep disorders, clinical pharmacology, behavioral therapeutics, instrumentation, methodology, and sleep health. This funding will increase global access to the International Sleep Medicine Examination through the creation of an online testing platform and scholarships for application fees.
- Sleep Consortium: Disparity Task Force Initiative – An Inclusive Approach to Patient-Owned Data Collection
This initiative will create a task force of individuals representing Black and Hispanic American communities diagnosed with various sleep disorders. The task force will concentrate on identifying barriers their communities face in collecting data in patient-owned platforms, consenting to data sharing practices, and understanding governance issues.
- Columbia University, Division of Cardiology: “REST: Reinforcing Essentials of Sleep for Teens” in a Diverse Population of High School Students in New York City
A 12-week behavioral and educational program for high school students in the Washington Heights community of New York City that aims to raise awareness of the importance of healthy sleep for the prevention of cardiovascular disease and other chronic diseases.
- American Academy of Neurology (AAN) Institute: Diversity Leadership Program
Diversity in the workforce is critical to cultivating trust in underrepresented communities. The Diversity Leadership Program is an intensive program that identifies, orients, and cultivates underrepresented minority neurologists into future leaders of the American Academy of Neurology and the greater field of neurology and helps to increase access to minority neurologists in communities where there is limited representation.
Harmony’s Patients at the Heart award program supports nonprofit organizations. To receive funding, applications must focus on one or more of the following categories:
- Programs that support persons with rare neurological diseases to live fuller, more engaged lives
- Programs that address the psychosocial challenges faced by persons with sleep disorders or rare neurological diseases who experience EDS, or their caregivers
- Programs that improve the overall support of family members of persons living with rare neurological diseases
- Creation of educational materials to increase awareness and decrease time to diagnosis of rare neurological diseases
Harmony’s Progress at the Heart award program supports nonprofit organizations. To receive funding, applications must focus on one or more of the following categories:
- Community Programs: People-centered, community-led programs to improve awareness and treatment in the sleep disorder and rare neurological diseases with sleep deficiencies communities and help achieve greater equality for underrepresented ethnic or other minority groups
- Education: General public and healthcare provider education and programs that increase awareness and decrease time to diagnosis of sleep disorders and rare neurological diseases with sleep deficiencies found in underrepresented ethnic or other minority groups
- Public Health: Creation of or modifications to public policies that impact underrepresented ethnic or other minority groups
- Other proposals that help achieve greater equality within rare neurological disease communities