What an exciting time! Interest in clinical research for Narcolepsy and Idiopathic hypersomnia is surging—progress that’s been decades in the making. When 11 women founded the Narcolepsy Network in 1986, no treatments existed. Four years later, 17 support group leaders traveled thousands of miles across the country to urge Congress to establish a sleep research institute, which became a reality at NIH in 1993. Since then, our advocacy has continued through partnerships with researchers, healthcare providers, and pharmaceutical companies. Forty years later, the possibilities for treatment and research are beyond anything we could have imagined. 

It has truly been an honor to play a small part in the exciting progress over the past few years. I am writing to let you know I will be moving on in 2026 to pursue other lifelong interests. I am profoundly moved and grateful to all of you who have shared your journey, courage, and grace, and will continue to do so.  

What we’ve learned over 40 years is that, regardless of the treatments available to people living with Narcolepsy and IH, the need for support, education, and community is critical – particularly for those who are newly diagnosed, navigating life’s challenges, and for providers striving to diagnose more effectively and treat patients. 

Narcolepsy Network has stayed the course, knowing that dedication and advocacy lead to better outcomes for people living with Narcolepsy and IH. Caring for one another is at the heart of who we are. As the original hypersomnia organization, we are proud to have paved the way for sleep advocacy and built a resilient community.  

Often, Narcolepsy Network has been referred to as the organization where people living with Narcolepsy and IH “come home”– the place where no one is alone.

I’ll be helping the Board as they move forward. You’ll be hearing more as we approach 2026.    

With warmth and admiration,