Illuminate Hypersomnia Initiative Shines Light on What It's Like to Live with Idiopathic Hypersomnia
Global Community Unites to Illuminate the Challenges and Treatment Aspirations of People Living with Idiopathic Hypersomnia
WEST PALM BEACH, Fla., Dec. 7, 2023 /PRNewswire/ — The Sleep Consortium, in collaboration with sleep-related patient advocacy organizations worldwide, announces the Illuminate Hypersomnia initiative, a groundbreaking effort to highlight the lived experience of idiopathic hypersomnia (IH). This initiative aims to fully describe the impact of IH on the lives of those affected, their current management strategies, and the treatment benefits that matter most to them as new therapies are developed.
On April 11, 2024, from 12:00-4:00 pm (ET), the Illuminate Hypersomnia initiative will host an externally led virtual patient-focused drug development (PFDD) meeting, conducted as a parallel effort to the U.S. Food and Drug Administration’s PFDD initiative. The meeting will be streamed live, bringing members of the global IH community together to share their experiences and perspectives. Additionally, a PFDD survey will be conducted in early 2024 to ensure a comprehensive understanding of the challenges faced by as many people with IH as possible. A “Voice of the Patient” report will summarize insights gathered from the PFDD meeting and survey, creating an invaluable resource for researchers, drug development sponsors, regulators, healthcare professionals, and others.
The Illuminate Hypersomnia initiative also aims to expand collaboration and support within the IH community to help individuals learn from and empower one another. Partner organizations include: Associação Brasileira de Narcolepsia e Hipersonia Idiopática, Damm Good Sleep, Days4Naps, Hypersomnia Alliance, Hypersomnia Foundation, Hypersomnolence Australia, Hypersomnolence Support Network Japan, Project Sleep, and PWN4PWN.
Early news about the initiative has generated interest from around the globe, validating the need for this initiative. A woman living in Queensland, Australia writes, “Decades of delayed diagnosis and a lack of effective treatment options means a huge loss of human potential. I mourn for what my life could have been.” From rural Texas a woman writes, “I have been struggling with IH for over 20 years. No medication works all the time. I hate the way medication makes me feel. I long for a treatment that would help me to have more energy and better concentration.” This hopeful request from a person in Ontario, Canada echoes many others received, “I want better treatment options to help myself and others living with IH to live a normal life!”
“Our mission with the Illuminate Hypersomnia initiative is clear: bring to light the hidden struggles of idiopathic hypersomnia and unite in the quest for better treatments,” remarked CEO of Sleep Consortium Lindsay Jesteadt, PhD. “We are fully committed to empowering the IH community, fostering collaboration, and driving innovation for a future where those affected can experience the full vibrancy of life without the weight of constant fatigue.”
Organizations generously supporting the Illuminate Hypersomnia initiative with unrestricted educational grants include Alkermes, Avadel Pharmaceuticals, Harmony Biosciences, Jazz Pharmaceuticals, Takeda, and Zevra Therapeutics.
How to Stay Informed and Get Involved
About PFDD and the Illuminate Hypersomnia Initiative
The Patient-Focused Drug Development (PFDD) initiative, initiated by the U.S. FDA in 2013, has been instrumental in providing a comprehensive understanding of the lived experience of more than 115 medical conditions to date. As an externally led PFDD meeting, the April 11, 2024 meeting provides IH patients a unique opportunity to express their experiences, needs, and priorities directly to FDA staff, researchers, and developers of medical therapies.
About Sleep Consortium and Idiopathic Hypersomnia
Sleep Consortium is a registered not-for-profit, 501(c)(3) organization created to accelerate next-generation research, disease understanding, and therapy development for those living with primary and secondary Central Disorders of Hypersomnolence (CDoH) and related diseases, of which idiopathic hypersomnia is one. IH is a rare chronic neurological disorder characterized by excessive daytime sleepiness (EDS, or hypersomnolence), extreme difficulty waking, abnormally long nocturnal sleep, unrefreshing naps, and autonomic and cognitive symptoms. For more information, visit Sleep Consortium – Idiopathic Hypersomnia
Lindsay Jesteadt, PhD
Co-Founder and CEO, Sleep Consortium