Harmony Biosciences Holdings Inc has selected the latest round of nonprofit organizations for its Patients at the Heart and Progress at the Heart awards, which provide funding support to initiatives addressing challenges affecting individuals with sleep disorders and rare neurological diseases.
Over the past four years, Patients at the Heart has supported 24 initiatives. The newest Patients at the Heart awardees and their initiatives include the following:
Kleine-Levin Syndrome Foundation: Awareness & Patient Support Progression
This initiative builds educational and support resources for people with Kleine-Levin syndrome (KLS) and the broader scientific community by creating a new ambassador program that connects patients, caregivers, educators, and professionals to enhance care.
“KLS is an exceptionally rare neurological disorder, affecting only one in a million individuals worldwide, primarily adolescents, and is characterized by episodes of excessive sleep, altered behavior, and a diminished understanding of the world,” says Dani Farber, VP of the Kleine-Levin Syndrome Foundation, in a release. “With support from a previous Patients at the Heart award, we achieved the ‘Strategic Communications for Awareness’ project, which fortified and expanded our patient registry and outreach endeavors. Building on this success, our ‘KLS Awareness and Patient Support Progression’ initiative will enhance resources for education, raise awareness, and establish a KLS ambassadorship program that will provide crucial support to patients, caregivers, educators, and professionals alike.”
Prader-Willi Syndrome Association | USA: PWS Sleep Within Reach Resources
This program educates health care professionals, caregivers of people with Prader-Willi syndrome (PWS), as well as residential and educational staff on the most misunderstood forms of sleep disorders, including those among people with PWS.
“We are honored to be recognized with a Patients at the Heart award for our ‘Reach Resources’ program, which provides free, multi-tiered support to individuals living with and affected by PWS,” says Stacy Ward, MS, interim CEO of the Prader‐Willi Syndrome Association | USA, in a release. “This initiative underscores our commitment to fostering collaborative care, involving professionals, caregivers, and educational staff. Through project elements like ‘PWS ECHO Sleep Within Reach’ and ‘ECHO Debrief,’ alongside the development of educational toolkits, we reaffirm our dedication to making a meaningful impact in the lives of those affected by this rare and challenging condition, as well as their loved ones.”
Progress at the Heart provides funding support for novel initiatives addressing disparities, injustices, and inequities in rare neurological disease and sleep disorder communities. In the two years since it started, it has supported 15 initiatives, including the newest recipients:
Rare & Black: The Restful Revolution
The Restful Revolution, a pilot program, will provide support to up to five Historically Black Colleges and Universities in the Washington, DC, and Baltimore area for the 2023-2024 academic school year. Its mission is to educate and empower students to cultivate healthy sleep habits and raise awareness about sleep disorders.
“For far too long, the sleep health of students at Historically Black Colleges and Universities and institutions with significant Black student populations has been unjustly overlooked,” says Dionne L. Stalling, founder of Rare & Black, in a release. “This innovative program marks an important step forward. In the upcoming academic year, we will visit up to five institutions in the Washington, DC, and Baltimore area, equipping students with essential sleep habits and shedding light on the challenges of sleep disorders. Together, with this funding support, we can create a future where every student’s overall well-being, particularly those from historically underserved communities, takes equal precedence.”
Geisinger Health Foundation: Wake Up and Learn
Wake Up and Learn is a virtual K-12 educational and surveillance program that facilitates a culture shift toward a valuation of sleep as essential for health and removing barriers to timely recognition, diagnosis, and management of sleep disorders in school-aged children. The 2024 program will expand the video curriculum, translate materials into Spanish, and assess impact through interviews with a focus on diverse geographic, ethnic and gender perspectives.
“We are facing a critical issue of sleep-wake disorders in the US, affecting a significant portion of the population, including many students,” says Anne Marie Morse, DO, a board-certified and fellowship-trained pediatric neurologist and sleep medicine specialist at Geisinger Health System, in a release. “Racial and economic disparities worsen this dire situation, leading to limited access to care and heightened stigma, particularly in historically underserved communities. Our latest effort, Wake Up and Learn, introduces a transcultural, school-based program emphasizing the importance of sleep for students’ well-being and their potential in life. Through this initiative, we seek to emphasize the crucial role of sleep in their journey to success and urge greater attention to recognizing poor sleep and addressing it promptly.”
The next call for Patients at the Heart and Progress at the Heart award nominations will be announced next year.
“Our Patients at the Heart and Progress at the Heart awards exemplify our commitment to empathy and innovation, catalyzing our commitment to these nonprofit organizations who are leading the way in addressing complex challenges posed by sleep and rare neurological disorders,” says Cate McCanless, chief corporate affairs officer at Harmony Biosciences, in a release. “We are honored to support these initiatives, which collectively hold the potential to make a lasting impact on individuals and communities facing significant unmet needs, while always placing patients at the heart of everything that we do.”
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