PLYMOUTH MEETING, Pa.,
Oct. 26, 2023 /PRNewswire/
-- Harmony Biosciences Holdings, Inc. ("Harmony") (Nasdaq:
HRMY), a pharmaceutical company dedicated to developing and
commercializing innovative therapies for patients with rare
neurological diseases, has selected the latest round of nonprofit
organizations for its Patients at the Heart and Progress at the
Heart awards. These awards provide funding support to nonprofit
organizations addressing the complex challenges affecting
individuals with sleep disorders and rare neurological diseases
through unique and impactful initiatives.
Over the past four years, Patients at the Heart has supported 24
initiatives aimed at addressing the comprehensive needs of
individuals and their families affected by sleep disorders and rare
neurological diseases. The newest awardees include the following
organizations:
Awareness & Patient Support Progression – Kleine-Levin
Syndrome Foundation
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," said
Dani Farber, VP of the Kleine-Levin
Syndrome Foundation. "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."
PWS Sleep Within Reach Resources – Prader-Willi Syndrome
Association | USA
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," said Stacy Ward, MS, Interim
CEO of the Prader‐Willi Syndrome Association | USA. "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:
The Restful Revolution – Rare & Black
The Restful
Revolution, an innovative 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," said
Dionne L. Stalling, Founder of Rare
& Black. "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."
Wake Up and Learn – Geisinger Health Foundation
Wake
Up and Learn is a virtual K-12 educational and surveillance program
that facilitates a culture shift towards 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," said Anne Marie
Morse, DO, a board-certified and fellowship-trained
pediatric neurologist and sleep medicine specialist at Geisinger
Health System. "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."
Harmony is dedicated to supporting significant transformation
within the rare neurological disease and sleep disorder
communities. 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," said Cate McCanless, Chief Corporate
Affairs Officer at Harmony Biosciences. "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."
To learn more about Patients at the Heart, please visit:
https://www.harmonybiosciences.com/funding-programs/patients-at-the-heart/.
To learn more about Progress at the Heart, please visit:
https://www.harmonybiosciences.com/funding-programs/progress-at-the-heart/.
About Harmony Biosciences
At Harmony Biosciences, we
specialize in developing and delivering treatments for rare
neurological diseases that others often overlook. We believe that
where empathy and innovation meet, a better life can begin for
people living with neurological diseases. Established by Paragon
Biosciences, LLC, in 2017 and headquartered in Plymouth Meeting, PA, our team of experts from
a wide variety of disciplines and experiences is driven by our
shared conviction that innovative science translates into
therapeutic possibilities for our patients, who are at the heart of
everything we do. For more information, please visit
www.harmonybiosciences.com.
Harmony Biosciences Media Contact:
Cate McCanless
202-641-6086
cmccanless@harmonybiosciences.com
Harmony Biosciences Investor Contact:
Luis Sanay, CFA
445-235-8386
lsanay@harmonybiosciences.com
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SOURCE Harmony Biosciences