What a journey 2024 has been, offering quality programs that focus on awareness, education, and support. As for a recap, we hosted a variety of Lifestyle and Clinical Update Webinars to keep you well informed. Lifestyle topics included: how to start a local support group, navigating accommodations, and behavioral tools, as well as an interactive discussion with Dr. Lois Krahn around the basics of managing Narcolepsy and Idiopathic Hypersomnia (IH). Clinical Update topics included current FDA approved treatments and research on orexin.

Below is some of the feedback we received from our online programs:

Patient Panel: Living with Narcolepsy & IH webinar with Jelissa Suarez and Ishika Sachdeva:
“I loved the two panelists for describing how they think to get through the world. Pacing themselves, giving themselves grace, etc.”
“I feel validated in some of my thoughts and feelings.”

Discussion with Dr. Krahn: Narcolepsy & Idiopathic Hypersomnia Basics webinar:
“Hearing common struggles and symptoms helps me to feel less alone.”
“Great presentation and valuable information. I feel a little more informed and empowered after listening to Dr. Krahn.”

Behavioral Tools for Hypersomnia webinar with Dr. Jason Ong and Dr. Denise Nelson:
“I walked away with information that I can apply to real life situations. I am optimistic about improving my quality of life.”

Suddenly Sleepy Saturday 2024, in its 12th year, continues to gain momentum raising awareness across the country! 28 proclamations and 40 requests – and much online engagement with FAST FACTS. Here is what Megan had to say about getting her proclamation from Tim Walz, Governor of Minnesota:
“These are small victories, but they are signs of hope that people like you and me are being seen, heard, and hopefully better understood and NOT labeled as lazy.”

Annually, Narcolepsy Network attends the Annual American Association of Sleep Medicine (AASM) SLEEP Meeting to connect and educate aspiring sleep doctors, primary care providers, and researchers on what it is like to live with Narcolepsy & Idiopathic Hypersomnia. This year we had an amazing time connecting and handing out our new brochures, What is Narcolepsy? And What is Idiopathic Hypersomnia?

Network Connections was a fabulous success with people connecting in both Charlottesville, Virginia and Philadelphia, Pennsylvania. We were honored to have informative speakers, Michael Strunc, M.D., Ellen Wermter, FNP, Funke Afolabi-Brown, M.D., and Jenie George, M.D. They addressed key lifestyle and medical issues in managing Narcolepsy & IH.

The NYC Reception and National Seminar was a great success with over 100 people in person connecting together. We met Ginger Zee and learned about her mental health journey at the Buddha Bar on November 1st. On November 2nd, we learned about research into orexin agonists from Dr. Thomas Scammell, navigating mental health from Dr. Eric Zhou, and navigating the diagnosis from the clinical perspective from Dr. Matthew Davis. Recordings of these presentations will be available next year!

Below is some of what we heard from attendees about the NYC National Seminar about their experiences:
“Thank you so much for being a safe space.”
“Meeting people who understand me.”
“Connecting and sharing our journeys was so meaningful.”
“The chance to hear from both experts and PWN in-person.”
“To hear the research and advancements in the treatment of Narcolepsy and IH.”

Our online weekly support groups and closed Facebook group continue to be the mainstay for those of you living with Narcolepsy and Idiopathic Hypersomnia. We are so grateful to you for trusting us in providing a safe space to connect, support, and learn together.

Next year we can’t wait to return to our signature Annual Conference in October 2025. Stay tuned for a save the date. Thank you to all who participate and please remember to keep abreast of news and events by subscribing to our email list.