We are excited to share, on World Narcolepsy Day, that PWSA | USA has been selected as one of Harmony Biosciences' 2021 Patients at the Heart recipients to educate the public on sleep effects in PWS.
About Harmony Biosciences Patients at the Heart Grant
Via Harmony Biosciences Press Release:
Harmony Biosciences Holdings, Inc. (“Harmony”) (Nasdaq: HRMY), a pharmaceutical company dedicated to developing and commercializing innovative therapies for patients with rare neurological diseases, today announced winners of the Patient at the Heart and Progress at the Heart programs in honor of the third annual World Narcolepsy Day.
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,” said Cate McCanless, SVP, Corporate Affairs and Public Policy. “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.
PWSA | USA Selected to Educate Sleep Affects in PWS
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.
About Harmony Biosciences
Harmony Biosciences is a commercial stage pharmaceutical company headquartered in Plymouth Meeting, PA. The Company was established by Paragon Biosciences, LLC, and is focused on providing novel treatment options for people living with rare neurological diseases who have unmet medical needs. For more information on Harmony, please visit the company's website: www.harmonybiosciences.com.
Share this!
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.