Reaching the 90-day mark in my role as executive director seems like a natural moment to pause, reflect, and evaluate. When I joined Narcolepsy Network in late April, my primary goal was straightforward: to listen, observe, and learn from the people who make this community what it is.

Over the past three months, from reviewing member survey feedback to representing our organization at the SLEEP 2026 conference and meeting with clinicians, advocates, partners, and patients, one theme has consistently stood out.

Our community does not simply want a safety net. You want a launchpad.

Traditionally, patient advocacy organizations like Narcolepsy Network have focused heavily on general support and coping strategies. While offering a safe, empathetic space remains foundational to our work, my focus and that of the Board over these first 90 days has been laying the operational groundwork to shift our focus toward patient agency and empowerment.

Living with narcolepsy or idiopathic hypersomnia (IH) requires managing complex medical systems, navigating insurance and appeals, securing academic or workplace accommodations, and understanding evolving treatment options. Moving forward, our programs will be designed to equip you with the practical tools, clinical literacy, and data needed to take active control of your care.

Here’s a brief look at how we have spent the last month translating this perspective into operational priorities:

• Educational Programs: Following the clinical trial updates presented at SLEEP 2026, particularly regarding emerging orexin agonists, our goal is to translate complex scientific data into clear, accessible concepts so you can have collaborative, informed discussions with your sleep specialists.
• National Event Infrastructure: We are continuing to evaluate venue proposals for our 2027 National Conference, evaluating host cities that offer practical accessibility, clear transportation links, and flexible spaces tailored to our community’s physical needs. Additionally, planning is well underway for our upcoming NYC National Seminar on November 14.
• Toolkits and Educational Resources: We are auditing our educational materials to ensure they provide immediate, practical utility for students, parents, working and retired adults and those on disability and Medicaid .

The work of a nonprofit organization is built on small, consistent steps that create long-term stability. As we move into the second half of the year, my priority remains strengthening our operational core, ensuring fiscal sustainability, and keeping our programs aligned with your daily realities.

Thank you to our board, staff, advisors, partners, and members for your continued collaboration over these first three months. I look forward to building on this foundation together.