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Stephanie 💤

@sleepy.steph

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Dream Big & Nap Often 💙
Patient Advocate living with Narcolepsy Type 2
Aspiring Sleep Scientist
Sleep Health 🤝 Public Health

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Narcolepsy + Driving 🚗 Our special guest panel of sleep experts and advocates will speak on the topic Tuesday, July 28 at 2 p.m. ET on YouTube.

Our upcoming #NarcolepsyNerdAlert broadcast, Narcolepsy and Driving, shares tips on managing symptoms, planning safe drives, and understanding legal driving requirements.

Meet our guests:

Liesel Mitchell 🚗 Sleep coach, researcher, writer, and patient advocate
Ming Lai 🚌 Retired RN and patient advocate
Mary Schneider 🚲 Patient advocate
Cassandra Murphy (@caseyzzz_journey) 🛻 Lawyer and patient advocate
Stephanie Manuli (@sleepy.steph) 🚙 Sleep research assistant and patient advocate
Sam Kashani, MD (@samkashanimd) 🛵 Sleep medicine physician
& host Farah Hasan 🚐 Sleep Education Specialist at Project Sleep

Add this event to your calendar at the link in our bio and subscribe to our YouTube channel to get notified when the broadcast goes live! by @sleepy.steph

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Nothing beats a beach nap…just don’t skip the sunscreen (learned this the hard way) taken in Puerto Rico by @sleepy.steph

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When I was 13, I joined my middle school cheerleading team. I loved that I could perform while also showing strength and athleticism.

It definitely wasn’t easy, though, with daily after-school practices and weekend practices that lasted up to eight hours. I dealt with a lot of sleepiness and would zone out whenever I wasn’t actively stunting or practicing. At the time, it just seemed like an annoying quirk that frustrated my coach.

A month after our last competition of the season, I was diagnosed with narcolepsy type 2. #Narcolepsy is a neurological sleep disorder that affects the brain’s ability to regulate sleep-wake cycles.

I was able to start treatment before my second year of cheerleading, and while I still faced challenges, I grew as an athlete and even got my back handspring—something that surprised both my coach and me.

That’s why seeing #Stumble use narcolepsy as a joke is so disheartening. Watching a cheerleader with narcolepsy reduced to a punchline is frustrating when I know firsthand that people with this condition are strong, capable, and determined.

Narcolepsy is not a joke or a punchline. It’s a real condition that deeply affects people’s lives. Accurate and compassionate representation can change how the world understands narcolepsy, and I hope @nbc will work with the community to get it right. To learn more and sign the petition, please visit the link in my bio. by @sleepy.steph

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“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has” - Margaret Mead

Hill Day 2025 was a huge success 🌟 taken in Capitol Hill, Washington, D.C. by @sleepy.steph

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I am incredibly honored to be recognized as this year’s Sleep Advocacy Champion. 🥹💙

At 14, I never imagined that my journey with narcolepsy would lead me to find my voice through sleep advocacy and inspire a career in sleep research.

I want to express my deepest gratitude to @remrunner and the @project_sleep Dream Team for their tireless efforts and dedication to amplifying patient voices. taken in Washington, DC by @sleepy.steph

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I am only a quarter through this book, but my goodness, is it fascinating! However, the book has received some valid criticism, so it's essential to take things with a grain of salt and do your own research! by @sleepy.steph

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Virginia Academy of Sleep Medicine Annual Conference #vasm2025 taken in Richmond, Virginia by @sleepy.steph

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🌍What’s sleep policy like around the world? Last fall, I asked my Canadian friends if we might put together a #WorldSleep2025 session to discuss this, they organized us, and our proposal got accepted!
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🎤On Tuesday. Sept 9, 2025, I was honored to share about @project_sleep’s policy efforts to represent the USA during our session: “Global perspectives on sleep health advocacy: Insights and experiences across five continents”

🌏It was fascinating to hear the perspectives from Iran, the UK, Nigeria, Australia, and Canada. Each country’s sleep efforts were in different stages of gaining recognition, some working to establish sleep as a medical specialty, and in others, working to establish sleep as a public health priority.

💫Everywhere, sleep remains an underdog working to be included in medicine and public health.

📍My biggest takeaway from the session was how #sleep touches everything other people do care about and prioritize, so some of our best advocacy tactics might include:
1. Asking policy makers how their sleep is,
2. Explaining how what they care about (perhaps reducing suicide, aggression, car accidents or workplace errors) can improve with greater focus on #sleephealth and #sleepdisorders.

🏳️‍🌈🏳️‍⚧️Also on Tuesday, Sept 9th, Stephanie Manuli @sleepy.steph presented the poster “Sleeping while Queer: Impacts of sexual and gender identity-related concerns on sleep health in the #LGBTQ+ community before and after the 2025 US presidential inauguration” taken in Singapore by @sleepy.steph

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💜 Today is World Narcolepsy Day 💜

Narcolepsy is a chronic neurological disorder that affects the brain’s ability to regulate sleep and wake cycles. It is much more than “being sleepy.” It can include sudden muscle weakness (cataplexy), disrupted nighttime sleep, excessive daytime sleepiness, and vivid dreams or hallucinations. Despite how common sleep struggles are, narcolepsy is often misunderstood and underdiagnosed.

For many of us living with narcolepsy, stigma can feel as exhausting as the condition itself. People may assume we are lazy, unmotivated, or simply need more coffee, when in reality we are managing a complex medical condition every day.

That is why #WorldNarcolepsyDay matters. It is a time to raise awareness and celebrate our community, our resilience, our advocacy, and our progress. Today I am proud to stand with others around the world to say: narcolepsy is real, our stories matter, and we deserve understanding and support.

🌎💤💜 Here is to awareness, compassion, and a world where everyone living with narcolepsy can thrive, dream big, and nap often.

#WorldNarcolepsyDay2025 taken in North Carolina by @sleepy.steph

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Tomorrow is #WorldNarcolepsyDay 🌎🎸 I can’t wait to celebrate and see everyone rocking their WND gear!!! Check out @project_sleep to learn more and get involved 💙✨ by @sleepy.steph

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🌍What an incredible experience reflecting back on #WorldSleep2025 @worldsleepsociety in Singapore!🇸🇬

🤩 Project Sleep was honored to take part in this global gathering of over 4,000 sleep researchers and clinicians from around the world, with @remrunner and @sleepy.steph in attendance!

🎤 From presenting patient stories and advocacy perspectives to conversations about #narcolepsy awareness, LGBTQ+ #sleephealth, #brainfog, and diagnostic delays-—we were proud to bring patient voices and @project_sleep’s work to the forefront. 💬✨

🧬💊🧠 We were especially thrilled to be present for the historic clinical trial results shared for orexin agonists. Takeda unveiled Phase 3 data for oveporexton (TAK-861) showing remarkable improvements in wakefulness, cataplexy, symptom severity, and quality of life for people with narcolepsy type 1. Alkermes also reported positive Phase 2 Vibrance-1 results for alixorexton, demonstrating clinically meaningful gains in wakefulness, cognition, and fatigue—all with once-daily dosing. 🎉

🌟We left inspired by meaningful conversations and advancements that will shape the future of sleep health and equity worldwide. Thank you to everyone who connected with us during this unforgettable event! 💙 by @sleepy.steph

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Still on cloud nine after an incredible week at World Sleep in Singapore 🌏💤. I got to present my research with @project_sleep on LGBTQ+ sleep health, share my perspective on the social aspect of living with narcolepsy in a symposium, and connect with so many inspiring sleep researchers and clinicians from around the world. Feeling grateful, inspired, and excited for what’s next. 💤✨ #WorldSleep2025 taken in Singapore by @sleepy.steph

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