Season 8 | Episode 17
In this episode of Talking Sleep, host Dr. Seema Khosla welcomes three patient advocates who are reshaping how sleep medicine is practiced and funded. Matt Horsnell, living with two sleep disorders and active as an author and panelist; Emma Cooksey, a lawyer and host of the Sleep Apnea Stories podcast; and Julie Flygare, a lawyer, author, and founder of Project Sleep, share their transformative advocacy work.
While clinicians often think of advocacy as writing letters or making donations, these three demonstrate that patient advocacy encompasses far more complexity and impact. They explain the multiple dimensions of advocacy work: legislative advocacy that influences policy and funding, educational advocacy that raises awareness and understanding, and research advocacy that shapes the scientific agenda.
The conversation begins with personal stories—what brought each advocate to this work and how living with sleep disorders motivated their commitment to systemic change. Matt shares insights as someone navigating two sleep conditions, while Emma and Julie discuss how legal training informed their approaches to advocacy and systems change.
Legislative advocacy receives detailed exploration. The guests explain how patient voices influence congressional action, regulatory decisions, and funding priorities. They discuss educational advocacy—raising public awareness, changing misconceptions, and helping people recognize sleep disorders they might otherwise dismiss or normalize.
Project Sleep, Julie’s organization, serves as a centerpiece for discussion. While Project Sleep doesn’t fund research directly, the conversation addresses which organizations do fund sleep medicine research and how clinicians and patients can access federal funding mechanisms. The guests provide insights into how disease-specific organizations like Wake-up Narcolepsy secure funding and the lessons applicable to sleep medicine more broadly.
Project Sleep’s helpline receives attention—what it offers, who it serves, and the critical challenge of sustainability when grant funding ends. The guests discuss Rising Voices, an initiative amplifying patient narratives and lived experience in policy and clinical discussions.
A particularly valuable discussion addresses how clinicians can meaningfully engage with patient advocacy. Is this space exclusively for people living with sleep disorders, or can healthcare providers contribute? The conversation explores collaboration opportunities without appropriating patient voices or experiences.
The guests address practical questions: How do you sustain advocacy work without becoming discouraged? What does advocacy look like at local versus federal levels? What’s on the wish list for sleep medicine advocacy? A recurring theme emerges: sustained funding remains elusive despite growing recognition of sleep disorders’ impact on public health.
The episode acknowledges that patients bring irreplaceable perspectives to clinical practice, research prioritization, and policy development. Their lived experience of navigating diagnoses, treatments, and healthcare systems provides insights clinicians cannot access through clinical practice alone.
Whether you’re interested in supporting patient-led advocacy, seeking to collaborate with patient organizations, curious about how to engage in legislative efforts, or simply wanting to understand the power of patient voices in healthcare transformation, this episode provides essential perspectives and practical guidance.
Join us for this important conversation with patient advocates who are leading meaningful change in sleep medicine.
Episode Correction: During the audio recording, federal funding for circadian research was misspoken as $60 Million. The correct amount is $600 Million.
Julie Flygare, JD, serves as President & CEO of Project Sleep. Flygare is an internationally recognized patient-perspective leader, an accomplished advocate, and the award-winning author of Wide Awake and Dreaming: A Memoir of Narcolepsy. In March 2022, she delivered the TEDx Talk, “What Can You Learn from a Professional Dreamer?” Recently, the Sleep Research Society awarded Flygare the 2024 Public Service Award for significantly advancing the mission of the SRS through advocacy and public policy efforts.
Since receiving a diagnosis of narcolepsy with cataplexy in 2007, Flygare advanced her leadership in the sleep and healthcare space through speaking engagements, publications, earned media, collaborations, and advocacy and awareness initiatives. Prior to accepting her current role as President & CEO of Project Sleep, Flygare served as President of Project Sleep’s Board of Directors, while also gaining invaluable experience in marketing and philanthropy at the Pancreatic Cancer Action Network and City of Hope. Additionally, she served on the National Institutes of Health’s Sleep Disorders Research Advisory Board from 2012 – 2015. Flygare received her B.A. from Brown University in 2005 and her J.D. from Boston College Law School in 2009, focusing on health law, policy, and rare disease drug development.
Emma Cooksey is an award-winning patient advocate, speaker, and writer. She was diagnosed with obstructive sleep apnea at the age of 30, after more than a decade of unexplained health issues. In 2020, Emma launched a weekly podcast, “Sleep Apnea Stories,” to break down stereotypes about sleep apnea while raising awareness of its symptoms and treatment options.
In her current role as Sleep Apnea Program Manager at Project Sleep, Emma runs the Sleep Apnea: Let’s Face It! awareness campaign, the Sleep Apnea Squad education series, and a monthly group Zoom call for sleep apnea support called “Coffee with Emma.” She works to empower people living with sleep apnea to seek the diagnosis, support, and care they need. Emma holds a degree in Law and Economics from the University of Aberdeen and now lives with her family in St Augustine, Florida.
Matt Horsnell is a husband, father of three, and sleep advocate living with NT1 (narcolepsy with cataplexy). As an author-advocate, he has published manuscripts, posters, and plain language summaries on lived experience with sleep disorders.
Matt is a leading legislative advocate for Project Sleep and a graduate of their Rising Voices program. He was recognized in 2023 as Project Sleep’s Inaugural Sleep Advocacy Champion, and in 2025 he was honored with Hypersomnia Foundation’s Patient Advocate Award. In 2023, Matt had the honor of presenting on Sleep Health Equity to The White House.
