As I wrap up my second month as executive director, I wanted to share an update on what I’ve been up to lately on behalf of Narcolepsy Network, and where we are heading next. Joining the organization in April was an honor, and these past weeks have given me a great introduction to the strength and dedication of our community.

In early June, I attended the SLEEP 2026 conference in Baltimore to represent Narcolepsy Network and to meet leading clinicians, researchers, fellow patient advocates, and pharmaceutical companies. It is an encouraging time for sleep medicine, particularly with the continued progress of next-generation orexin agonists in clinical trials with the possibility of one coming to market as soon as late 2026.

While the scientific updates are promising, our main focus at the conference was ensuring that patient perspectives remain a central part of the conversation. True progress isn’t just about clinical trials; it is about addressing the real-world challenges our community faces daily, which include delays in diagnosis and the accessibility and affordability of key medications. 

Behind the scenes, we are working on our National Seminar in New York City on November 14. This one-day educational event will feature speakers on orexin agonists, co-morbidities with narcolepsy and IH, and access to care. Most importantly, it will give us the opportunity to get to know and support each other.

We have also been busy planning our 2027 National Conference, which we hope to hold in spring or early summer. Our goal is to make our next major gathering accessible and impactful, while keeping costs as low as possible. Over the past month, we have been reviewing venue proposals in several cities. We’re paying close attention to the specific details that matter to our community, such as accessible layouts, practical travel logistics, and venues that accommodate your needs. We hope to finalize and share the dates and location with you soon.

I want to extend a sincere thank you to our board and partners for their warm welcomes over these first two months. I look forward to meeting many more of you, including more people with narcolepsy and IH and their supporters, over the weeks and months to come.

Whether we are advocating for better medications and accommodations, expanding our educational resources, or communicating with the stakeholders in our work, our success relies entirely on our shared efforts. The future is bright, and we are just getting started.