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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!

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"Can you drive with #narcolepsy?" 🚦 Our panel of special guests shares all you need to know Tuesday, July 28 at 2 p.m. ET on YouTube.

Our special #NarcolepsyNerdAlert broadcast, Narcolepsy and Driving, shares tips on managing symptoms, planning safe drives, and understanding legal driving requirements from a guest panel featuring:
🚗 Liesel Mitchell
🚌 Ming Lai
🚲 Mary Schneider
🛻 Cassandra Murphy (@caseyzzz_journey)
🚙 Stephanie Manuli (@sleepy.steph)
🛵 Sam Kashani, MD (@samkashanimd)
🚐 & host Farah Hasan

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!

#narcolepsy Graphic announcement for our Narcolepsy Nerd Alert broadcast on narcolepsy and driving, premiering on YouTube on July 28 at 2 p.m. ET.

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➡️Swipe to see patient advocacy in action!

🌟 From June 14-17, 2026, Project Sleep team members and advocates gathered in Baltimore, MD for #SLEEP2026 — the premier meeting in sleep medicine and research, hosted by @aasmorg and @researchsleep.

🎤 We presented in sessions, participated in panels, and emphasized the importance of including patient perspectives in every conversation about #sleephealth and #sleepdisorders.

📸 Swipe to see some of our favorite moments at SLEEP, then head to the 🔗 in our bio for the full recap!

🌌 A huge thank you to all of the amazing community members and patient advocates that traveled far and wide to support Project Sleep and its mission. Thank you AASM and Sleep Research Society for encouraging clinicians and researchers to include patient voices and patient advocacy organizations in your major sleep meeting!

#SleepResearch #SleepAdvocacy

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💙 #Sleep2026 was dreamy!

Honored to present in two conference sessions: 1. Patient-reported outcomes in #narcolepsy and 2. #Sleep in the media (the patient advocacy perspective).

🤗 One of the greatest parts of this year’s conference was cheering on other patient advocates in sessions. The inclusion of patient advocacy voices in the main sessions was AWESOME! Thank you @aasmorg & @researchsleep

☀️This year, narcolepsy was the “golden child” of the conference, IMO. The drug developers and industry partners are very active and engaged, it’s a bit overwhelming really, but the excitement of the upcoming orexin agonists making it through clinical trials was palpable.

👋 I enjoyed meeting new sleep friends IRL and soaking in the hugs and laughs with old friends I’ve known for many years.

💕Heading home exhausted yet glowing, bc @project_sleep’s dream continues to grow and strengthen, I’m forever grateful to walk this journey with you all!

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💕 There’s nothing better than doing what you love—especially when you’re surrounded by people who care just as fiercely about progress as you do.

💙❤️The 6th annual Sleep Advocacy Forum in Washington, DC was pure magic. ✨ I cannot believe it’s taken me a month to post these pics, but honestly… I haven’t stopped moving since I got home. From the @nbc #Stumble efforts to the @project_sleep Sleep Apnea Action Alert, it’s been nonstop advocacy season.

⭐️ Some days it’s hard to find hope in health advocacy, but our bipartisan Congressional CMS sleep apnea letter has been a real bright spot. Representatives are signing on because of YOU — our incredible community taking action across the country.

💫 These photos may look glamorous, but behind every smile is a lot of unglamorous work (hi, endless emails!). We don’t just gather, chit-chat, and call it a day. We’re pushing forward on an issue that will change countless lives — and that grit, that resilience, is where this community absolutely shines.

♥️ Thank you to everyone who makes @project_sleep and our broader sleep efforts possible. I’m living a dream because of this community, and I’m grateful from the bottom of my sleepy heart.

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☕️ This trend got us thinking… what fills our cup as sleep advocates?

💙 For us, it’s the conversations that spark understanding, the connections that strengthen our community, and the shared commitment to making #sleep a national priority.

🤝 Advocacy fills our cup because it’s a collective effort. When people from every corner of the sleep community come together to learn, listen, support, and speak up, real change becomes possible.

‼️ Take action with us by asking your Representative to support modernizing sleep apnea coverage at the Centers for Medicare and Medicaid Services. (Note: You don’t need to have sleep apnea to make your voice heard!)

🔗 in bio or comment “ACTION” to get started!

#ProjectSleep #SleepAdvocacy #SleepHealth #SleepEquity #SleepDisorders #DreamTeam #CMS #ThingsIDoToFillMyCup #FillMyCup

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🏆 Project Sleep is proud to announce our 2025 Sleep Advocacy Champion, Stephanie Manuli, MPH (@sleepy.steph)!

💡 Stephanie’s journey with Project Sleep began in 2019 as a Rising Voices speaker. Since then, she’s grown into a powerhouse patient advocate, attending multiple Sleep Advocacy Forums, the 2023 White House Sleep Equity Convening, and joining Project Sleep’s Board of Directors in 2024.

📣 Inaugurated in 2023, 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.

🌟 Each year, the award recipient is recognized for outstanding and significant contributions advancing the policy goals of Project Sleep and the broader #sleep community.

💙Congratulations, Stephanie, and thank you for your incredible leadership in #sleepadvocacy!

➡️ Read the full recap from our 2025 Sleep Advocacy Forum at the 🔗 in our bio!

#ProjectSleep #SleepAdvocacyChampion #SleepAdvocacyForum #SleepHealth #SleepEquity #SleepDisorders #SleepEducation #PatientAdvocacy

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Advocacy is built on hope.
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It took me a few days to organize my thoughts about @project_sleep Sleep Summit and Hill Day. For my past seven visits to DC I’ve dropped my “Ussies with the Hominids” post from my visit to the Smithsonian. This year the museums were closed. Missing out on that moment was a first world problem, but it was also a stark reminder of the impact of the shutdown.
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While the evidence of the shutdown and the parade of dump trucks from the White House were prevalent, the trip was marked with hope. It’s hard not to be optimistic when you’re hanging out with some of the best and brightest minds in advocacy and sleep. Every year I walk away with new professional relationships, and this year it came from the Director of Yale Sleep Medicine, Dr. Klar Yaggi.
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In 2023, I was honored as Project Sleep’s Inaugural Sleep Advocacy Champion. Last year watching @lmt826 be recognized was a highlight. This year that honor was bestowed upon @sleepy.steph! There is something surreal about being a part of such an exclusive club. Watching the next generation of advocacy leaders grow gives me hope.
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Sleep is a bipartisan issue, but it can be challenging to rally GOP support. While I enjoy the meetings where support is readily extended, I love the meetings where we walk in with uncertainty and walk out with support. This year, I experienced that chatting with TN Senators, and with the senior staffer with an Utah Congresswoman. Those moments give me hope.
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Special shoutout to our Hill Day team @andersonfam2000, @drjennytalbert, @farahhasan354, and @thatssoheather for their incredible efforts on Hill Day. Special shoutout to @fabsleepdoc, @sleepdrchris, @michaelgrandner, @sleepdrlindsay and @lex0586 for being incredible ambassadors and leaders.
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And to @remrunner, thanks for believing in a scruffy PWN from Tennessee all those years ago. Thanks for blazing the original trail.
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#sleep #advocacy #HillDay #DreamTeam #narcolepsy #sleepapnea #ProjectSleep #narcolepsynotalone #worldsstrongestpersonhavingnarcolepsywithcataplexy #hope #believe

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Team SLEEP is on Capitol Hill! Leaders of professional sleep societies and patient advocacy organizations are in Washington DC to advocate for sleep research, patient care, awareness and education.
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Thank you @aasmorg @atscommunity @wakeupnarcolepsy @hypersomniafoundation @startschooll8r @savestandardtime @sleep_consortium @behavioral_sleep_medicine @project_sleep!!

Superstars including @sleepdrchris @mhorsnell @sleepapneastories @cecenarcolepsy @sleepy.steph @clairewyldswright @michaelgrandner and many more!!

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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”

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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! 💙

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✈️ Project Sleep is sending patient advocacy leadership to Singapore for World Sleep 2025!

🌟 Our President & CEO, Julie Flygare (@remrunner), and Board Member, Stephanie Manuli (@sleepy.steph), will present at the World Sleep Congress 2025 from September 5–10, 2025!

🌏 World Sleep is a global scientific congress that brings together the best of sleep medicine and research. The conference presents a unique opportunity for sleep medicine professionals to network and learn from the best minds in sleep and medicine research.

📚 Between them, Julie and Stephanie will present at seven sessions (!), sharing patient perspectives, research, and advocacy insights with the global sleep community.

🎤 Some of our most anticipated sessions include Julie joining a cross-continent panel on sleep health advocacy, and Stephanie sharing Project Sleep’s research on how sexual and gender identity-related concerns affect sleep health.

➡️ Learn more at the 🔗 our bio!

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