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Sunday, Oct 6, 2024
Mugglehead Magazine
Alternative investment news based in Vancouver, B.C.

Sleep

Award programs raise awareness of sleep-related disorders

The Patients of the Heart program supports the needs of people affected by rare neurological diseases.

award programs
Photo by Jonathan Fink via Unsplash

Harmony Biosciences Holdings (NASDAQ:HRMY) chose World Narcolepsy Day to announce the recipients of the funds of its Patients at the Heart and Progress at the Heart award programs.

Launched in 2019, the Patients of the Heart program supports the needs of people affected by rare neurological diseases. The program awarded numerous nonprofit organizations helping people living with sleep disorders and rare neurological diseases.

“Combining empathy with innovation to improve the lives of people living with rare neurological diseases is a mission that drives everyone at Harmony Biosciences. In recognition of World Narcolepsy Day, we are pleased to announce this year’s recipients of the Patients at the Heart and Progress at the Heart award programs. 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,” said Cate McCAnless, chief corporate affairs officer.

Harmony Biosciences develops treatments for rare neurological diseases. Originally established by Paragon Biosciences in 2017, Harmony’s headquarters is in Plymouth Meeting, PA. The company includes team of multi-disciplinary experts.

Award recipients

The Progress at the Heart program was started in 2021 and awards funds to programs addressing health disparities and inequalities in rare neurological disease and sleep disorder communities. Combined with the Patients at the Heart awards, the total funding for the two programs is now $380,000.

The 2022 Patients at the Heart award went to the following companies in 2022:

  • Muscular Dystrophy Association: MDA Access Workshops: Access to Coverage
    These workshops focus on increasing community health understanding and empowerment. The funding will be used on expanding MDA Access Workshops, and for the addition of a new program called Access to Coverage. The new program will provide an interview on how to get insurance coverage for medical equipment.
  • Hypersomnia Foundation: #UNITE Beyond Sleepy – An Interactive Forum for Peer-to-Peer Relational Connections
  • KLS Foundation: Strategic Communications for Awareness
    The intent is to increase outright and communication with the Kleine-Levin Syndrome community to raise awareness of the condition.
  • Prader-Willi Syndrome Association | USA: Caregiver Retreat
    This event gives up to thirty parents/caregivers the chance to attend a three day, two night event on teaching new skills to care for someone with Prader-Willi syndrome.
  • 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.

The Progress at the Heart award went to the following companies in 2022:

  • World Sleep Society: Ensuring Equity in the International Sleep Medicine Exam – An Inclusionary Imperative
  • Sleep Consortium: Disparity Task Force Initiative – An Inclusive Approach to Patient-Owned Data Collection
  • Columbia University, Division of Cardiology: “REST: Reinforcing Essentials of Sleep for Teens” in a Diverse Population of High School Students in New York City
  • American Academy of Neurology (AAN) Institute: Diversity Leadership Program

In order to receive funding, applications need to focus on one or more items. These include awareness improving community programs, education, public health or other equality seeking proposals within rare neurological disease communities.

Read more: Not sleeping enough has negative impacts on immune function: NIH

Read more: Purple Innovation’s latest acquisition means luxury sleep experiences

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