On Monday, October 28, 2024, Project Sleep facilitated the fifth annual Sleep Advocacy Forum in Washington, DC. This in-person event brought together a diverse group of policy makers and sleep community leaders to share updates and discuss areas of common interest. This year’s forum was centered around sleep and public health.
This year’s forum featured powerful patient perspectives, sleep research updates, Project Sleep’s new Hollywood & Sleep Initiative, and the naming of the 2024 Sleep Advocacy Champion.
During Project Sleep’s 5th annual Sleep Advocacy Forum, patient advocate Lauren Thomas was named the Sleep Advocacy Champion of 2024. The Sleep Advocacy Champion Award annually recognizes an individual who has worked to elevate the voice of sleep through federal and grassroots advocacy and public discourse. Starting in 2023 with the inaugural awardee, Matt Horsnell, Lauren is the second recipient of this award.
Lauren’s involvement with Project Sleep began in 2020. In four years, she has served on the World Narcolepsy Day Committee and been featured in the Narcolepsy Nerd Alert Series and the Sleep Disorders Conversation for Journalists. In addition, Lauren traveled to Washington DC in Fall 2023 to share her story at Project Sleep’s White House Sleep Equity Convening.
Sleep Advocacy Champions are trailblazers and community leaders who lead by example and embody Project Sleep’s commitment to making progress for sleep health, sleep equity, and sleep disorders. “Lauren has overcome so much adversity, and shares her experience with such honesty and vulnerability,” said Julie Flygare, President & CEO of Project Sleep. “This is so important as we work to make change for a brighter future where sleep is recognized as a pillar of health.”
I advocate for all of us who have navigated these complex, winding paths in search for answers, and for those who still are. I am profoundly honored to be recognized as a Sleep Advocacy Champion.”
– Lauren Thomas, Patient Advocate & Sleep Advocacy Champion Awardee
Certified health coach, chronic illness advocate, and Executive Director of the AIP BIPOC Network, Jamie Nicole, set the stage by sharing the compelling story of her type 2 narcolepsy without cataplexy diagnosis and treatment journey. As a speaker with Project Sleep’s Rising Voices program, Jamie aims to empower individuals by raising awareness about narcolepsy, promoting understanding, and inspiring others to find strength and resilience in their own journeys.
I am determined to advocate for greater awareness and understanding of narcolepsy. I want to ensure that those who are struggling can find the support and resources they need to navigate their own path to wellness.”
-Jamie Nicole, Rising Voices Speaker
Next, Dr. Marishka Brown, Director for the National Center on Sleep Disorders Research (NCSDR), returned to our annual forum to deliver an update on advances and emerging opportunities in sleep and circadian research.
As Director of the National Center on Sleep Disorders Research (NCSDR), Marishka K. Brown, Ph.D., leads the science of sleep and chronobiology into innovative discoveries that improve health. Some topics she touched on in her presentation were sleep disparities, sleep and maternal health, and sleep apnea.
Dr. Brown highlighted the importance of sleep research, stating, “You hear about people talking about pillars of health like physical activity and nutrition, but sleep is certainly part of that conversation. Sleep drives these things.”
A very special guest speaker, Congresswoman Eleanor Holmes Norton, joined us for a few brief remarks. Congresswoman Eleanor Holmes Norton is a member of the Transportation and Infrastructure Committee and the Oversight and Accountability Committee. Serving in Congress since 1991, she has distinguished herself as a champion on medical research, public health, patient care, and health equity.
Sleep is a significant public health issue. I will continue to work to ensure that it is considered as such and gets the funding and attention it needs.”
–Congresswoman Eleanor Holmes Norton
After lunch, the forum continued with an important and insightful Patient Perspectives Panel. This panel included Josh Andrews, Amy Clifton, Farah Hasan, and Dr. Jenny Talbert and was moderated by Lindsay Scola. Each panelist shared a bit about themselves and their diagnosis journeys, and discussed things that could have lead to a quicker diagnosis.
There were so many instances where schoolteachers could have asked, ‘why are you falling asleep in my class?’ And I think it would have gone a really long way.”
-Farah Hasan, Rising Voices Speaker
Josh Andrews and Amy Clifton both live with type 1 narcolepsy with cataplexy, Farah Hasan lives with idiopathic hypersomnia, and Dr. Jennifer Talbert lives with sleep apnea.
The 2024 forum closed out with a presentation from Lindsay Scola on Project Sleep’s new Hollywood and Sleep Initiative. Scola highlighted the influence movies and TV have on culture, perceptions, and what is deemed “normal” by society.
“The media that we consume shapes what we know and what we believe and how we act. Television has the power to define what is normal without us realizing it.”
-Lindsay Scola
Advocacy Organizations Represented:
Federal Speakers Represented:
Professional Societies Represented:
Congressional Participants:
A huge thank you to all those who made the 2024 Sleep Advocacy Forum such a wonderful meeting! Special thanks to our sponsors who made this event possible, including Jazz Pharmaceuticals, Avadel, Harmony Biosciences, Takeda, Centessa Pharmaceuticals, Alkermes, Zevra Therapeutics, Apnimed, Resmed, Lilly, and Axsome.
While this year’s Sleep Advocacy Forum aimed to foster in-person connections, the 2020 and 2021 Sleep Advocacy Forums were virtual, with extensive video content available online to watch.
I am determined to advocate for greater awareness and understanding of narcolepsy. I want to ensure that those who are struggling can find the support and resources they need to navigate their own path to wellness.”
