Part 1

Hypersomnia in the Spotlight: Let’s look toward a hopeful future!

Wow. Almost 40 years since Narcolepsy Network’s founding, the light is shining more brightly on research for central disorders of hypersomnolence. Last week, Keith Harper, Board President, Rachel De Jesus, Board Member, Mary Beth Rodriguez, Marketing Manager, and I had the pleasure of meeting with many dedicated professionals at SLEEP 2025. Academic researchers, physicians, and pharmaceutical partners, and many other professionals and sleep advocates came together in Seattle to discuss the groundbreaking clinical research taking place now. We are looking at a changed community where the voice of the patient is critical, and clinical research across narcolepsy and idiopathic hypersomnia is growing.

If I had one SLEEP 2025 takeaway to share with you, this is our moment as a community to have hope for the future–a future that leads to greater wakefulness and personal fulfillment for people living with narcolepsy and idiopathic hypersomnia.

Narcolepsy Network has and continues to build towards a better lived experience—bringing people with narcolepsy and idiopathic hypersomnia together to support each other at events and online, sharing stories, and offering a range of education tools and webinars– this work is paying off in 2025.

Growth and change bring great opportunities. We will be there for you, educating on research and treatments, in a balanced and impartial manner that honors individual choices.  Each of you is in different places in your journey and will make unique choices managing your narcolepsy and idiopathic hypersomnia—choosing treatment and lifestyle options that fit your individualized needs. 

We also are well aware of the challenges in getting medical care professionals to understand hypersomnia disorders, and to obtain insurance coverage. We can’t solve many of these issues, but we can create greater awareness around them, and seek to engage a wider array of sleep professionals in participating in educational webinars and presenting at events. Of course, we continue to be a resource to professionals and actively engage in sharing our knowledge and your stories with researchers, physicians and pharmaceutical companies. 

With our long history of supporting you, our work continues on to help those of you needing resources to navigate the complexities and challenges living with narcolepsy and idiopathic hypersomnia. 

With heartfelt hope,  Amy

What do we need from you? 

Engagement in the issues and an understanding that it takes a village to be prepared for the future and to support organizations like Narcolepsy Network in amplifying the work ahead. Over the course of the coming months and at our upcoming annual conference in Minneapolis, October 24–26, we will continue to educate on clinical research, provide support, and share health and wellness tips.

POSTER HALL

This is an opportunity for professionals as well as advocates to present new research in a succinct poster.  Below is a snapshot of just some of the posters we visited and examples of posters.

ASSESSMENT STUDIES: Actigraphy-based assessment of the Impact of TAK-861 on daytime napping with People with Narcolepsy Type 1 and Accelerometry Assessment of factors related to how TAK-861 effects disrupted sleep in people with Narcolepsy Type 1. (Takeda Pharmaceuticals)

CRESCENDO SURVEY – Residual Symptom Burden in Patients with Narcolepsy Satisfied with Treatment. (Axsome Pharmaceuticals and 3rd party research firm work in collaboration with Narcolepsy Network)

DUET STUDY-Effectiveness and Safety of Low-Sodium Oxybate in Participants with Narcolepsy and Effectiveness and Safety of Low-Sodium Oxybate in Participants with Idiopathic Hypersomnia. (Jazz Pharmaceuticals)

EFFECTS OF PITOLISANT STUDIES – Include effect on Idiopathic Hypersomnia symptoms during a double-blind withdrawal period in Phase 3 trial; Effect on Idiopathic Hypersomnia during an open-label period in a Phase 3 Clinical Trial; and Long-Term safety and effectiveness on use in adult patient with Idiopathic Hypersomnia. (Harmony Biosciences)

LGBTQ+SURVEY– Looking at how the shifting political landscape impacts sleep for LGBTQ individuals. (Project Sleep)

PREGNANCY STUDY – Narcolepsy Type 1 Symptoms Across Pregnancy. (Beth Israel Lahey Medical Center, Boston)

RESTORE STUDY -Successful Transition from Twice Nightly Oxybates to Once-Nightly Sodium Oxybate. (Avadel Pharmaceuticals)

VIBRANCE 3 STUDY DESIGN– Includes methods for Phase2 randomized, placebo-controlled, parallel-group Study evaluating the safety and efficacy ALKS -2680 in patients with Idiopathic Hypersomnia. (Alkermes Pharmaceuticals)

Stay tuned for next week’s E-News for  SLEEP 2025, Week II recap: Hypersomnia Clinical Research Sessions!