Podcast appearances and mentions of julie flygare

Welcome to the NeurologyLive® Mind Moments® podcast. Tune in to hear leaders in neurology sound off on topics that impact your clinical practice. In this episode, Julie Flygare, JD, president and chief executive officer of Project Sleep, shared her personal and professional insights into the critical role of social connections for patients living with narcolepsy and idiopathic hypersomnia. Drawing from her journey with narcolepsy, Flygare highlighted the challenges of isolation at diagnosis and the transformative power of peer support and advocacy. She delved into survey findings that underscore the rarity of social connections among patients and their impact on adjustment and well-being. Additionally, Flygare offered actionable recommendations for clinicians to integrate social support into practice, emphasizing the value of patient advocacy organizations and fostering meaningful connections. Above all, her inspiring perspective shed light on the intersection of community, research, and clinical care in sleep health. Looking for more narcolepsy discussion? Check out the NeurologyLive® Narcolepsy clinical focus page. Episode Breakdown: 1:00 – Challenges and importance of social connections 5:45 – Building a thriving community and research impact 7:30 – Insights from patient surveys on social support 10:30 – Neurology News Minute 12:25 – Recommendations for clinicians on social support The stories featured in this week's Neurology News Minute, which will give you quick updates on the following developments in neurology, are further detailed here: FDA Approves Mirdametinib for NF1-Associated Plexiform Neurofibromas in Adults and Children FDA Approves Tablet Formulation of Risdiplam for Spinal Muscular Atrophy Solid Reports Positive Data for SGT-003 Gene Therapy in Phase 1/2 Trial of Duchenne Thanks for listening to the NeurologyLive® Mind Moments® podcast. To support the show, be sure to rate, review, and subscribe wherever you listen to podcasts. For more neurology news and expert-driven content, visit neurologylive.com.

I am joined in this exploration of narcolepsy by Julie Flygare, an internationally recognized patient-perspective leader, and an accomplished advocate, to discuss her patient perspective of the disease as narrated in her award-winning memoir, Wide Wake and Dreaming. Julie has advanced her leadership in the sleep and healthcare space through speaking engagements, publications, earned media, collaborations, and advocacy and awareness initiatives. Our conversation explored Julie's onset of narcolepsy with excessive sleepiness long before she was diagnosed with narcolepsy after she developed cataplexy. She discussed her on-going struggles with the diverse symptoms of the disease, as well as here validating investigations, and indispensable medical treatments. Our conversation also covered what her diagnosis has taught her regarding prioritising time and appreciating the moment. Prior to accepting her current role as President & CEO of Project Sleep, Julie 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. Julie served on the National Institutes of Health's Sleep Disorders Research Advisory Board from 2012 – 2015, and she delivered the TEDx Talk, “What Can You Learn from a Professional Dreamer? on March 22, 2022,

In today's episode, Brittny chats with Julie Flygare, JD. Julie serves as President & CEO of Project Sleep. Believing in the value of sleep, Project Sleep aims to improve public health by educating individuals about the importance of sleep health, sleep equity, and sleep disorders. Project Sleep educates and empowers individuals using events, campaigns, and programs to bring people together and talk about sleep as a pillar of health. Julie is also an internationally recognized patient-perspective leader, an accomplished advocate, and the award-winning author of Wide Awake and Dreaming: A Memoir of Narcolepsy. Links:Project Sleephttps://project-sleep.com/Sleep Helplinehttps://project-sleep.com/helpline

Storytelling is so powerful. In this episode, we speak with two amazing fellow authors who wrote books about narcolepsy, Claire Crisp and Henry Nicholls. Together, we share some behind-the-scenes stories and tips for aspiring writers. About Our Guests: Claire Crisp is an award-winning author of Waking Mathilda—A Memoir of Childhood Narcolepsy which charts her family’s heart-wrenching journey to find an accurate diagnosis and then move from the UK to the USA in search of life changing treatment for their youngest child, Mathilda. HenryNicholls is a teacher, science journalist, and author, and his book Sleepyhead: The Neuroscience Of A Good Night’s Rest explores the neuroscience of sleep and the impact sleep disorders have on physical and mental health. And of course, your host, Julie Flygare, author of Wide Awake and Dreaming: A Memoir of Narcolepsy which tracks Julie’s journey developing and adjusting to narcolepsy in her early twenties while in law school, from collapsing to the ground to the start line of the Boston Marathon. Book Links: Waking Mathilda—A Memoir of Childhood Narcolepsy: https://www.amazon.com/Waking-Mathilda-Memoir-Childhood-Narcolepsy-ebook/dp/B06W584QT6/ref=sr_1_1?crid=MBLAJKFC3P31 Sleepyhead: The Neuroscience Of A Good Night’s Rest: https://www.amazon.com/Sleepyhead-Neuroscience-Good-Nights-Rest/dp/1541672577/ Wide Awake and Dreaming: A Memoir of Narcolepsy: https://www.amazon.com/Wide-Awake-Dreaming-Memoir-Narcolepsy/dp/0988314908 Download the Narrating Narcolepsy Toolkit for more resources: bit.ly/narrating-narcolepsy-toolkit The Narcolepsy Nerd Alert series invites listeners to dive deeper into specific topics relevant to living with narcolepsy. project-sleep.com/narcolepsy-nerd-alert/

Making Sleep Cool - In this first episode of ‘Run The Business' Ant meets with Julie Flygare, CEO of ‘Project Sleep' a non-profit organization dedicated to raising awareness about sleep health, sleep equity, and sleep disorders. Julie talks to Ant about the ways in which running improves her life and how the idea for Project Sleep came to her while out on a run.As President & CEO of ‘Project Sleep' Julie is passionate about raising awareness of Narcolepsy – a neurological disorder that affects 3 million people worldwide. She is a TEDx speaker and author of ‘Wide Awake & Dreaming: A Memoir of Narcolepsy.'All the links:Anthony Gay Twitter - https://twitter.com/anthonygayAnthony Gay LinkedIn - https://www.linkedin.com/in/gayanthony/Julie Flygare Twitter - @RemRunnerJulie Flygare Insta - https://www.instagram.com/remrunner/Julie Flygare LinkedIn - https://www.linkedin.com/in/julieflygare/ https://project-sleep.com/Reel2Media Twitter - https://twitter.com/Reel2MReel2Media Insta - https://www.instagram.com/reel_2_media/ Hosted on Acast. See acast.com/privacy for more information.

Show Notes: Our guest during this interview is Julie Flygare, the president and CEO of Project Sleep and host of the Project Sleep podcast. Julie shared information about narcolepsy and some of the exciting things that are happening through Project Sleep. Some of the key information we discussed are the difference between type 1 narcolepsy and type 2 narcolepsy, cataplexy, current research for narcolepsy, and accommodations for students with narcolepsy. Contact Project Sleep: Website: https://project-sleep.com Podcast: https://project-sleep.com/podcast/ Pediatric Narcolepsy Survey: https://project-sleep.com/wp-content/uploads/2021/10/Pediatric-Narcolepsy-Boston.pdf Julie's Book, Wide Awake and Dreaming: A Memoir of Narcolepsy: https://amzn.to/3wgE0H4 Genetic Marker for Narcolepsy: HLA-DBQ1*06:02More information on page 11: https://project-sleep.com/wp-content/uploads/2021/09/Science-of-Narcolepsy-Toolkit.pdf Connect with Us: https://linktr.ee/waterprairie Support this channel: https://www.buymeacoffee.com/waterprairie Music Used: “LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/ Artist: http://audionautix.com/

Recently Emma attended the SLEEP 2022 Conference run by the Association of Professional Sleep Societies (APSS) which is a joint venture of the American Academy of Sleep Medicine (AASM) and the Sleep Research Society (SRS). Emma used the opportunity to interview as many people as she could. Interviews featured include: * Julie Flygare, Founder, and CEO of Project Sleep, talks about the inclusion of patient voices in conferences like SLEEP 2022. * Dr. Joshua Roland M.D., a board-certified sleep specialist, answers your questions about sleep apnea. * Dr. Chelsie Rohrscheib from Wesper discusses how monitoring your sleep with their patches can help improve your sleep quality. * Olivier Lauzeral at Somnics Health, talks about the iNAP device for treating obstructive sleep apnea. * Dr. Shelby Harris, sharing helpful sleep tips for travel. * David Baxter from SleepGlad explains his app to improve mask fit by scanning patient faces. * Nick Glattard, Co-founder and CTO at Ensodata speaks about how technology improvements in scoring sleep tests can ultimately help patients get more accurate test results. * Dr. Sam Kashani M.D., a board-certified sleep specialist, answers your questions. * Dr. Keith Thornton D.D.S., of Airway Management describes the TAP appliances he has developed to help people with snoring through to severe sleep apnea. * Mollie McGlocklin, fellow podcast host and founder of "Sleep Is A Skill", shares info on how she gets great sleep. * Drew Copeland and Teresa DeNike of Sleep Better NYC on their favorite highlights from the sleep conference. * Emma Cooksey - Drew turns the microphone on Emma to ask her a few questions! This episode is sponsored by Inspire https://www.inspiresleep.com/ Airway Management https://tapintosleep.com/ BetterHelp https://www.betterhelp.com/emma Follow the podcast on Instagram: @sleepapneastories Email Emma at sleepapneastories@gmail.com www.sleepapneastories.com Disclaimer: this episode of the podcast includes people with sleep apnea discussing their own experiences with medical procedures and devices. This is for information purposes only and you should consult with your own medical professionals before you start or stop any medication or treatment.

Julie Flygare, J.D., is a leading ambassador for narcolepsy and sleep, and a strong advocate for patient-centered research and the importance of social support. She is an accomplished speaker, Stanford Medicine X ePatient Scholar, and the award-winning author of Wide Awake and Dreaming: A Memoir of Narcolepsy. As President & CEO of Project Sleep, Julie leads the organization's patient-driven advocacy, awareness, and education programs. For over a decade, she has fostered a variety of successful collaborations including bringing together 29 patient advocacy organizations to co-lead World Narcolepsy Day and launching the Sleep Advocacy Forum to elevate the sleep community's profile on the national policy stage. Julie has lectured at numerous professional meetings across the U.S. and keynoted conferences in Ireland, Italy, Sweden, Australia, and the United Kingdom. She has co-authored papers in peer-reviewed publications and authored a chapter in a narcolepsy clinical textbook. Julie received her B.A. from Brown University and her J.D. from Boston College Law School focusing on health law and rare disease drug development. Wide Awake and Dreaming: A Memoir of Narcolepsy: Julie Flygare's website: http://julieflygare.com/ Project Sleep's website: https://project-sleep.com/ Project Sleep's Instagram: @project_sleep https://www.instagram.com/project_sleep/?hl=en Project Sleep's Facebook: https://www.facebook.com/ProjectSleepAwareness Project Sleep's Twitter: @project_sleep https://twitter.com/project_sleep Project Sleep's YouTube: https://www.youtube.com/c/Project-sleep

On this episode of Sh!t We Don't Talk About, Mia welcomes guest Julie Flygare of Project Sleep to talk about narcolepsy and cataplexy, two conditions we definitely do NOT talk about enough! Narcolepsy is more than just randomly falling asleep. Narcolepsy is a life-impacting neurological disorder that rarely gets described accurately and does not get the attention it requires. --- For full show notes on this episode, visit https://miavoss.live/43 Find Mia online here or here. --- Support this podcast: https://anchor.fm/miavosslive/support

CME credits: 0.25 Valid until: 30-09-2022 Claim your CME credit at https://reachmd.com/programs/cme/narcolepsy-awakening-new-day-its-management/12838/ Excessive sleepiness is a common, highly impactful problem not commonly reported and frequently misdiagnosed by physicians. While prevalence reports of narcolepsy vary, patients often do not seek medical advice for their symptoms or, if they do, they receive inaccurate diagnoses. Because of this, it's possible that more than 1 in 2000 people are living with narcolepsy. It may even take 10 to 15 years to be diagnosed, during which time these patients are impaired. What signs and symptoms are both clinicians and patients missing? Tune in to hear a patient, Julie Flygare, JD, recount her bizarre symptoms and receive clinical tips on how to improve your identification of overlooked sleep disorders and narcolepsy. Drs. Zee, Doghramji, and Kuritzky provide their clinical insight and expertise on this serious medical condition that continues to be grossly misdiagnosed, underdiagnosed, and undermanaged. By improving your ability to detect, accurately diagnose, and appropriately manage narcolepsy, you can improve the quality of life and health outcomes for your patients. Find out what subtle signs and red flags you need to be on the lookout for and what exciting therapies are now available for these patients.

CME credits: 0.25 Valid until: 30-09-2022 Claim your CME credit at https://reachmd.com/programs/cme/narcolepsy-awakening-new-day-its-management/12838/ Excessive sleepiness is a common, highly impactful problem not commonly reported and frequently misdiagnosed by physicians. While prevalence reports of narcolepsy vary, patients often do not seek medical advice for their symptoms or, if they do, they receive inaccurate diagnoses. Because of this, it's possible that more than 1 in 2000 people are living with narcolepsy. It may even take 10 to 15 years to be diagnosed, during which time these patients are impaired. What signs and symptoms are both clinicians and patients missing? Tune in to hear a patient, Julie Flygare, JD, recount her bizarre symptoms and receive clinical tips on how to improve your identification of overlooked sleep disorders and narcolepsy. Drs. Zee, Doghramji, and Kuritzky provide their clinical insight and expertise on this serious medical condition that continues to be grossly misdiagnosed, underdiagnosed, and undermanaged. By improving your ability to detect, accurately diagnose, and appropriately manage narcolepsy, you can improve the quality of life and health outcomes for your patients. Find out what subtle signs and red flags you need to be on the lookout for and what exciting therapies are now available for these patients.

#39: In this episode, I chat with Julie Flygare, President & CEO of Project Sleep about World Narcolepsy Day 2021 (celebrated on September 22nd each year). I was diagnosed with Narcolepsy while I was a college student at Colorado State. Then in 2014, my cataplexy symptoms developed. This is a neurological condition that has so many stigmas and misinformation. I'm so grateful to Julie for the work she's doing to help people get diagnosed faster and just general awareness. To connect with Julie, click HERE To connect with Leyla, click HERE Check out Project Sleep, HERE Julie Flygare, JD, currently serves as President & CEO of Project Sleep. She is an internationally recognized patient-perspective leader, an accomplished advocate, and the award-winning author of Wide Awake and Dreaming: A Memoir of Narcolepsy.  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 is joined on the podcast by Julie Flygare, President and CEO of Project Sleep. Julie has suffered with Narcolepsy with Cataplexy and is an accomplished sleep disorders advocate. Emma and Julie discuss: *Symptoms and early warning signs of Narcolepsy; *Julie's journey through diagnosis and treatment; *How sleep studies for Narcolepsy differ from those for Sleep Apnea; *The need for more awareness around Sleep Disorders and more money for Sleep Disorders Research; *How listeners can get involved in supporting Project Sleep. You can find all the information about Project Sleep, including social media handles on the website: https://project-sleep.com/ Julie's book "Wide Awake and Dreaming: A Memoir of Narcolepsy" is available now. Find all the details of where to buy it here You can follow Emma on Instagram @sleepapneastories Sign up for email updates about the podcast and get a free printable pdf called "CPAP Lessons I Learned the Hard Way" here

TW: This episode discusses sexual assault and rape, which may be triggering for some individuals. Lauren Thomas is a person with narcolepsy, a narcolepsy advocate and works in the champagne business. In this vulnerable and candid episode, Lauren shares how she was diagnosed with narcolepsy just a little over a year and a half ago, but recounts how narcolepsy symptoms were part of her childhood. Lauren also shares her journey with mental health issues, which she now considers were linked to narcolepsy and directly contributed to her delayed diagnosis. After college, she finally saw an endocrinologist, who was helping her with weight loss and recommended a sleep study. This was a pivotal experience that led to a diagnosis of Type 1 Narcolepsy at the age of 28. Despite Lauren’s long journey to diagnosis, she’s taken time to fine tune her medication and adapt her life to support her symptom management, and during this period began to work for her family’s company, Cheurlin Champagne, the 1st African American-owned Champagne Company. Lauren also tested positive for COVID-19 this past March. She shares her experience fighting the virus and how her symptoms weren’t necessarily the standard symptoms being communicated. You can follow Lauren at @lmt826 on Instagram and her family’s business, Cheurlin Champagne, @cheurlin1788   on Instagram. If you are interested in finding out more information about Cheurlin Champagne go to www.cheurlin.com. Lauren recommends Wide Awake and Dreaming by Julie Flygare. She is on the planning committee for World Narcolepsy Day with Project Sleep. She also recommends an alarm clock called MedCenter. She says, “ I am obsessed with my talking alarm clock. I can set up to 4 different alarms at a time and it literally says ‘the time is .... this your reminder to take your meds..’ relentlessly, it’s annoyingly efficient!” You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Create an inclusive, accessible co-working space for aspiring entrepreneurs with disabilities, small startups, or groups that serve the disability community. QuirkLaabs. hollarhype. Puffin Innovations. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem 00:57. 1 The right place at the wrong time 04:11. 1 Technology that fits itself to the user 09:51. 3 Get hyped by the voices that matter most 14:36. 3 Checking off boxes 19:26. 4 Adapting to uncertainty 25:03. 5 Leveraging abilities to access better solutions 27:59. 6 A hug from eight arms (Now!??) 34:01. 7 Reflection 39:17. 8 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger John Lennon's Imagine by the InterPlay Company Sponsored by Abridge Thanks to these fine people who inspired me for this episode: Diane Gould, Mary Devlin, Mary Ulrich, Jill Woodworth, Mary Lawler, Mekhala Raghavan, Lauren Reimer-Etheridge, Julie Flygare, Sara Lorraine Snyder Links Email QuirkLaabs hollarhype PlayLocal.com Puffin Innovations myXpressions 70/30 Partners My'Empowerment Easter Seals Massachusetts Akimbo District Hall Advocates, Inc. Related podcasts and blogs https://health-hats.com/inspire-me-once-inspire-me-twice/ https://health-hats.com/ya_transition/ https://health-hats.com/but-you-can-total-self-care-at-13/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem Greetings. The background music is John Lennon's Imagine played by the InterPLAY Company Band non-profit music organization of 67 adult musicians with and without cognitive and other differences. They rehearse at Strathmore Hall in Rockville Maryland. Readers be sure to have a listen. Brings happy tears to my eyes. Connection and community stoke my fires – a counterweight to Multiple Sclerosis and fatigue. Producing this podcast episode renewed my awareness of and gratefulness for connection and community in my life: Family connections, music connections; communities of podcasters and patient/caregiver advocates, decision support experts; leadership, storytelling, and marketing mastermind groups; a book club. These connections and communities nurture me, feed me, and draw me in. The networks also need care and feeding by me to sustain th...

Create an inclusive, accessible co-working space for aspiring entrepreneurs with disabilities, small startups, or groups that serve the disability community. QuirkLaabs. hollarhype. Puffin Innovations. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem 00:57. 1 The right place at the wrong time 04:11. 1 Technology that fits itself to the user 09:51. 3 Get hyped by the voices that matter most 14:36. 3 Checking off boxes 19:26. 4 Adapting to uncertainty 25:03. 5 Leveraging abilities to access better solutions 27:59. 6 A hug from eight arms (Now!??) 34:01. 7 Reflection 39:17. 8 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger John Lennon's Imagine by the InterPlay Company Sponsored by Abridge Thanks to these fine people who inspired me for this episode: Diane Gould, Mary Devlin, Mary Ulrich, Jill Woodworth, Mary Lawler, Mekhala Raghavan, Lauren Reimer-Etheridge, Julie Flygare, Sara Lorraine Snyder Links Email QuirkLaabs hollarhype PlayLocal.com Puffin Innovations myXpressions 70/30 Partners My’Empowerment Easter Seals Massachusetts Akimbo District Hall Advocates, Inc. Related podcasts and blogs https://www.health-hats.com/inspire-me-once-inspire-me-twice/ https://www.health-hats.com/ya_transition/ https://www.health-hats.com/but-you-can-total-self-care-at-13/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all this. To subscribe go to https://www.health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem Greetings. The background music is John Lennon’s Imagine played by the InterPLAY Company Band non-profit music organization of 67 adult musicians with and without cognitive and other differences. They rehearse at Strathmore Hall in Rockville Maryland. Readers be sure to have a listen. Brings happy tears to my eyes. Connection and community stoke my fires – a counterweight to Multiple Sclerosis and fatigue. Producing this podcast episode renewed my awareness of and gratefulness for connection and community in my life: Family connections, music connections; communities of podcasters and patient/caregiver advocates, decision support experts; leadership, storytelling, and marketing mastermind groups; a book club. These connections and communities nurture me, feed me, and draw me in.

Julie Flygare is - if you'll pardon the expression - a tireless advocate for people suffering with narcolepsy. Learn how much you didn't know - including how the movies have made it worse for everyone - and what can be done to help. LINKAPALOOZA: https://project-sleep.com/ (Project Sleep's website) http://julieflygare.com/about/ (Everything else you wanted to know about Julie, you can learn here.)

At least 67,000 individuals have died of Covid19 in the US and 244K worldwide so far. Each death is a family's grief. How do we advocate for ourselves, each other? Palliative care = feeling less miserable. Have you discussed end-of-life and palliative care with your family? Do it now. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem 00:53. 1 Introducing Judy Thomas 03:10. 2 Palliative care in Covid19 world 05:15. 2 End-of-life choices 11:14. 3 Shifting to no-touch telecommunication 15:00. 4 Guidelines change by the minute. Palliative care, not so much 19:45. 5 Palliative care, feeling less miserable 25:56. 6 Reflections. Simple Gifts 31:30. 7 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger the way i become about dying by Michael P. Funk 2002 Simple Gifts, Shaker Hymn, played by Danny van Leeuwen on baritone saxophone Sponsored by Abridge Thanks to these fine people who inspired me for this episode: MarlaJan Wexler, Charlie Blotner, Danielle Edges, Julie Flygare, Elizabeth Jamison, Kathy Kastner, Michael Fratkin, Shirley Otis-Green, Selene Seltzer, Ruben van Leeuwen, Simon van Leeuwen, and Anica Madeo Links Coalition for Compassionate Care of California POLST Related podcasts and blogs https://www.health-hats.com/salt-in-my-soul-an-unfinished-life/ https://www.health-hats.com/coalition-for-compassionate-care-of-california/ https://www.health-hats.com/been-there-done-that-open-heart/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all this. To subscribe go to https://www.health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem the way i become about dying Michael P. Funk 2002 i am not things. i am sum of things, guessing that i’m part of God, wondering if there’s some place where my soul will go from where I might look down with advantages my eyes did not have and see the tops of trees which I used to walk beneath for shelter from rain and sun, and see the way things go together like continental tracts of land punctuated by water and lights and roads and other concrete artifaces   I am, this very moment dying from headache tumors that erase my cognitive ability so that I might be retarded when I wake up tomorrow, or I might know answers, or I might still be guessing  

At least 67,000 individuals have died of Covid19 in the US and 244K worldwide so far. Each death is a family's grief. How do we advocate for ourselves, each other? Palliative care = feeling less miserable. Have you discussed end-of-life and palliative care with your family? Do it now. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem 00:53. 1 Introducing Judy Thomas 03:10. 2 Palliative care in Covid19 world 05:15. 2 End-of-life choices 11:14. 3 Shifting to no-touch telecommunication 15:00. 4 Guidelines change by the minute. Palliative care, not so much 19:45. 5 Palliative care, feeling less miserable 25:56. 6 Reflections. Simple Gifts 31:30. 7 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger the way i become about dying by Michael P. Funk 2002 Simple Gifts, Shaker Hymn, played by Danny van Leeuwen on baritone saxophone Sponsored by Abridge Thanks to these fine people who inspired me for this episode: MarlaJan Wexler, Charlie Blotner, Danielle Edges, Julie Flygare, Elizabeth Jamison, Kathy Kastner, Michael Fratkin, Shirley Otis-Green, Selene Seltzer, Ruben van Leeuwen, Simon van Leeuwen, and Anica Madeo Links Coalition for Compassionate Care of California POLST Related podcasts and blogs https://health-hats.com/salt-in-my-soul-an-unfinished-life/ https://health-hats.com/coalition-for-compassionate-care-of-california/ https://health-hats.com/been-there-done-that-open-heart/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem the way i become about dying Michael P. Funk 2002 i am not things. i am sum of things, guessing that i'm part of God, wondering if there's some place where my soul will go from where I might look down with advantages my eyes did not have and see the tops of trees which I used to walk beneath for shelter from rain and sun, and see the way things go together like continental tracts of land punctuated by water and lights and roads and other concrete artifaces   I am, this very moment dying from headache tumors that erase my cognitive ability so that I might be retarded when I wake up tomorrow, or I might know answers, or I might still be guessing   or I might be you

Within this episode of Deep into Sleep, Julie Flygare, the founder, president, and CEO of project sleep, shared her own story and community support resources for Narcolepsy with us, as well as how to deal with Narcolepsy after the diagnosis. Show note: deepintosleep.co/episode/020.

Within this episode of Deep into Sleep, Julie Flygare, the founder, president, and CEO of project sleep, shared her own experience with Narcolepsy, especially the common symptoms of it. Show note: deepintosleep.co/episode/020.

In todays episode I am talking with Julie Flygare who is the president and CEO of Project Sleep and the author of the book: Wide awake and dreaming: A Memoir of narcolepsy. She is talking with me how she is coping with narcolepsy and how she made out of her illness a really cool project which effects a lot people with and without narcolepsy all over the world.

Narcolepsy is a widely misunderstood sleep disorder which affects around 3 million people worldwide. Lack of awareness, and misrepresentation in the media has led many people to struggle not just with managing their condition, but also coping with the social stigmas and prevalent attitudes in society towards narcolepsy and sleep disorders in general. In today's episode we talk to Julie Flygare, lawyer, advocate, award-winning author and CEO of Project Sleep, about the social experience of living with narcolepsy.   This Episode's Guest Julie Flygare, JD is the founder of Project Sleep, a non-profit raising awareness about sleep health and sleep disorders. Julie is a leading narcolepsy spokesperson and award-winning author, diagnosed with narcolepsy with cataplexy in 2007. She received her B.A. from Brown University in 2005 & her J.D. from Boston College Law School in 2009. In 2013, “Wide Awake and Dreaming” won the First Prize Biography/Autobiography Award at the San Francisco Book Festival. Upon recognizing that many doctors were unfamiliar with narcolepsy, Julie collaborated with Harvard Medical School researchers in 2009 to establish a 5-hour educational program based on her story now taught to all Harvard Medical School students. https://www.youtube.com/watch?v=MXTd8xd_f8s More Resources Project Sleep: https://project-sleep.com/ Twitter: https://twitter.com/project_sleep Instagram: https://www.instagram.com/project_sleep/ Youtube: https://www.youtube.com/user/projectsleepvideos/videos Julie's Website: http://julieflygare.com/ Julie @LinkedIn: https://www.linkedin.com/in/julieflygare/ The Book: Wide Awake & Dreaming: A Memoir of Narcolepsy Sleep Junkies Interview: Rising to the challenge: narcolepsy advocate Julie Flygare Episode Homepage: http://sleepjunkies.com/narcolepsy-social-experience/ More Episodes:

Narcolepsy is a widely misunderstood sleep disorder which affects around 3 million people worldwide. Lack of awareness, and misrepresentation in the media has led many people to struggle not just with managing their condition, but also coping with the social stigmas and prevalent attitudes in society towards narcolepsy and sleep disorders in general. In today's episode we talk to Julie Flygare, lawyer, advocate, award-winning author and CEO of Project Sleep, about the social experience of living with narcolepsy.   This Episode's Guest Julie Flygare, JD is the founder of Project Sleep, a non-profit raising awareness about sleep health and sleep disorders. Julie is a leading narcolepsy spokesperson and award-winning author, diagnosed with narcolepsy with cataplexy in 2007. She received her B.A. from Brown University in 2005 & her J.D. from Boston College Law School in 2009. In 2013, “Wide Awake and Dreaming” won the First Prize Biography/Autobiography Award at the San Francisco Book Festival. Upon recognizing that many doctors were unfamiliar with narcolepsy, Julie collaborated with Harvard Medical School researchers in 2009 to establish a 5-hour educational program based on her story now taught to all Harvard Medical School students. https://www.youtube.com/watch?v=MXTd8xd_f8s More Resources Project Sleep: https://project-sleep.com/ Twitter: https://twitter.com/project_sleep Instagram: https://www.instagram.com/project_sleep/ Youtube: https://www.youtube.com/user/projectsleepvideos/videos Julie's Website: http://julieflygare.com/ Julie @LinkedIn: https://www.linkedin.com/in/julieflygare/ The Book: Wide Awake & Dreaming: A Memoir of Narcolepsy Sleep Junkies Interview: Rising to the challenge: narcolepsy advocate Julie Flygare Episode Homepage: https://sleepjunkies.com/narcolepsy-social-experience/ More Episodes:

#4: Julie Flygare is a narcolepsy spokesperson and the award-winning author of Wide Awake and Dreaming: A Memoir of Narcolepsy. She lives in Los Angeles and speaks across the country and world to open people's hearts and minds to the real narcolepsy, a neurological disorder affecting 3 million people worldwide. Julie is also the founder of Project Sleep, which aims to improve public health by educating individuals about the importance of sleep health and sleep disorders. Project Sleep educates and empowers individuals using events, campaigns, and programs to bring people together and talk about sleep as a pillar of health.    In this episode, you’ll learn about Julie and her own narcolepsy story, how she approaches being present, saying no, living life on her own terms, and how she went about getting an international day dedicated to narcolepsy! (September 22nd!)  To connect with Julie Flygare, click HERE To connect with Leyla Sarper (host), click HERE To find out more about Project Sleep & World Narcolepsy Day check out: https://project-sleep.com/worldnarcolepsyday/ To learn more about Julie Flygare check out: http://julieflygare.com/ Don’t forget to subscribe to the show so you can see when the next episode is posted! If you enjoyed this episode, please share with a friend who may also get value from it. And finally, please leave a review and let us know what you liked or any valuable takeaways you left with. Thank you! XO Leyla

In this episode we talk about all things sleep and much more! How does sleep impact our energy, mood, and clarity? How much sleep do we need each night? How did you discover your Narcolepsy? How can we improve our sleep patterns? Should naps be allowed and supported at work? Let's talk about dreams and remembering dreams What would you tell people who just found out they have narcolepsy? Find your self affirming voice within all the voices in your head. This will make you happier. More about Julie: Julie Flygare, J.D. is an internationally recognized patient-perspective leader, an accomplished advocate, and the award-winning author of Wide Awake and Dreaming: A Memoir of Narcolepsy. 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. Currently, she serves as President & CEO of Project Sleep, a non-profit organization raising awareness about sleep health and sleep disorders. Prior to accepting this role, 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. Where to find Julie: Instagram: https://www.instagram.com/remrunner/ Website: http://julieflygare.com/ Project Sleep: https://project-sleep.com/ Find her book here: Wide Awake And Dreaming --- Support this podcast: https://anchor.fm/morehappylife/support

This episode is part of my sleep disorder series, and I've been looking forward to this interview for a while. I met Julie Flygare online, through our Instagram accounts and a mutual interest in sleep. Julie is the founder of Project Sleep and an advocate for people living with narcolepsy. Before meeting Julie and reading her book, I didn't know anything about narcolepsy. I thought it was what most of us think - falling asleep suddenly without any control of where you are or what you're doing. Narcolepsy is very misunderstood, and not all that rare, and that's why I wanted to have Julie tell her story.You can find Julie on Instagram as @remrunner, Project Sleep's website at: https://project-sleep.com, and the Narcolepsy Not Alone campaign at: http://www.narcolepsynotalone.com/A HUGE Thank you to this episode's sponsor, Zenbev, a natural drink mix that promotes sleep by easing anxiety and racing thoughts. It contains only a small handful of natural ingredients and tastes great! Save 10% off your order with the coupon code, SLEEPCOACH10, at https://zenbev.com Hosted on Acast. See acast.com/privacy for more information.

Julie Flygare is an author, Founder, CEO & President of Project Sleep, an advocate and a person with narcolepsy. She started the Narcolepsy Not Alone Campaign, the Jack and Julie Scholarships for college-age students with narcolepsy and the Rising Voices of Narcolepsy Program. In this episode, Julie shares her diagnosis story which led her to change her career trajectory and embark on becoming a vocal advocate for people with narcolepsy. Her advocacy has allowed her to write a memoir, found a non-profit, work in the public policy space, create international social campaigns, and develop programs that empower other pwns to become advocates. She also shares the exciting upcoming World Narcolepsy Day launch which takes place September 22, 2019. This episode is jam-packed with information about the programs and support Project Sleep is currently offering. Julie and Claire discuss what is going on with federal funding for sleep and narcolepsy research. How to use social media as an advocate, and what it’s like to write a memoir! It was such a pleasure to hear Julie's story and work. You can follow Julie at @REMRunner on Instagram & Twitter and @JulieFlygareAuthor on Facebook. You can learn more about advocacy work at www.julieflygare.com. You can also follow Project Sleeps efforts at @project_sleep on Instagram & Twitter and @ProjectSleepAwareness on Facebook. You can learn more about the programs, initiatives, and support Project Sleep offers at  www.project-sleep.com.   You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.

Narcolepsy can have significant impact on health and function, which can also affect work and family. Often in managing narcolepsy the focus is on medication, but medications are often only partially effective. Learning how to live with these ongoing symptoms and reduce their impact is an important part of living well with narcolepsy. For more information on narcolepsy, see our narcolepsy page and listen to episode 2 of Sleep Talk where we talk about narcolepsy diagnosis and treatment Audio Timeline: 00:00 - 00:48 Introduction 00:48 -  04:14 What's in the news about sleep? 04:14 - 05:36 Theme introduction: Narcolepsy 05:36 -  32:42 Guest interview - Jacqui Tomlins: Living with narcolepsy 32:42 - 34:28 Clinical tip of the month - Build your own team 34:28 - 36:05 Pick of the month: Moira - What makes a good life? 36:05 - 37:47 Pick of the month: David - Waking, Dreaming, Being 37:47 - 38:54 What's coming up in the next month? Next episode (May 9th 2016): Sleep in New Parents Links mentioned in the podcast: Sleep Talk podcast episode 2 - Narcolepsy: Diagnosis & Treatment What is sleep eating? What is narcolepsy? Dating with narcolepsy - Julie Flygare in Women's Health Claire Crisp's site Narcolepsy page on SleepHub Sleep Talk podcast episode 2 - Narcolepsy: Diagnosis & Treatment Stanford Center for Narcolepsy Julie Flygare's site Wide Awake and Dreaming - Julie Flygare's book Narcolepsy Support Australia Narcolepsy Network What makes a good life? - TED talk Waking, Dreaming, Being - Evan Thompson

This week I'm joined by Julie Flygare for a conversation about narcolepsy advocacy, running the Boston Marathon, a lesson in what it takes to write your own memoir, the growth of Project Sleep, the impact of Narcolepsy: Not Alone, The Simpsons, and funny ways to pronounce last names. Follow Julie on Twitter @RemRunner, julieflygare.com, and project-sleep.com. Run Time - 37:25 Send your feedback to feedback@justtalkingpodcast.com.