Podcast appearances and mentions of claire crisp

In this episode, I explore the curious sleep disorder narcolepsy. With apt patient memoirs, I describe its clinical manifestations, from sleep attacks and cataplexy, to sleep paralysis and sleep-related hallucinations. I also review its association with other sleep disorders, and its non-sleep related manifestations. The podcast also discusses the genetic and acquired causes of narcolepsy, its association with hypocretin deficiency, and its risk factors. I also explore the investigations of narcolepsy, such as multiple sleep latency test, and its treatments, such as modafinil and sodium oxybate. I also discussed the history of narcolepsy, such as anecdotes its discovery by Jean-Baptiste Édouard Gélineau. I also narrate the history of how sleep researcher Eugene Aserinsky discovered the two sleep phases, REM and non-REM. To illustrate the lived experience of narcolepsy, I cite such insightful patient memoirs as that of Corrina Wetzel titled The Journey Beneath Her Heavy Feet, by Henry Nicholls titled Sleepyhead, and of Claire Crisp titled Waking Mathilda. To support the historical themes, I cite such works as When Brains Dream, by Antonio Zadra and Robert Stickgold, and A Portrait of the Brain by Adam Zeman.

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/

We've got lots of new things coming for 2022, but before we get into that I wanted to take a look back at our early episodes and rerelease my top 10  picks for the month of December.  To be clear, picking my favorite episodes is like picking my favorite child—it's impossible--so I based my decision on 3 criteria, 1) interviews of women who overcame something outside of the regular struggle of running a business,  2) a unique industry the guest disrupted and 3) guests that were just as much as teachers as storytellers. I hope you enjoy these episodes and please be sure to follow us on Instagram where we will be rolling out our big news throughout December. I want to keep you, our podcast family, in the loop. Our third throwback episode is with Claire Crisp. This is one of those stories that lives at the intersection of obstacle and opportunity. Claire's a mother who turned advocate and author as a result of her child's rare condition. Her memoir Waking Matilda takes you on the family's journey through the hardship and the joy as they navigate this uncharted territory. Claire offers insight into the entrepreneurial aspects of authoring and self-publishing, and she's honest and encourages you to find ways to share your own story and even fight to be heard. I hope you enjoy Claire's story.Please follow us at @libertyforher on Instagram--that's where we hang out the most. And please rate and review us—it helps to know if this podcast is inspiring and equipping you to launch and grow your ventures.

Claire Crisp, author and executive director of Wake Up Narcolepsy, opens up about her experience of parenting a child with narcolepsy and about how we theologically engage with the realities of chronic conditions. For more resources for a deeply formed spiritual life, visit Fuller.edu/Studio.

Part of Wake Up Narcolepsy’s mission is to provide supportive resources for people with Narcolepsy and their families. During this time of massive daily life alterations, we want to continue to offer those resources. We are all going through a traumatic event together and as we are adapting to a new normal within our homes some may find it difficult to create structure. We created a miniseries called Doing Life During COVID-19 to address different aspects of daily life we may need extra support with during this time. Wake Up Narcolepsy's Executive Director, Claire Crisp talks with Lindsay Jesteadt, Director of Development at Wake Up Narcolepsy. Claire has experiencing homeschooling and Lindsay has a PhD in Educational Leadership with an emphasis on Special Education Policies and Procedures. She has held an assistant principal position and teaching graduate-level students online. Both Claire and Lindsay are parents to children with narcolepsy. In this discussion, Claire and Lindsay share their current experience homeschooling their kids while working a fulltime job while safer at home protocols are in place. They share insights about the main issues the educational system is facing during the mandated homeschooling. They discuss from their experience the potential positives and negatives for CWN being educated at home. They share resources that may be helpful for students and parents who are experiencing homeschooling during this time. 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 Apple Podcasts.

Part of Wake Up Narcolepsy’s mission is to provide supportive resources for people with Narcolepsy and their families. During this time of massive daily life alterations, we want to continue to offer those resources. We are all going through a traumatic event together and as we are adapting to a new normal within our homes some may find it difficult to create structure. We created a miniseries called Doing Life During COVID-19 to address different aspects of daily life we may need extra support with during this time. Our fifth episode in our Doing Life During COVID-19 miniseries is addressing trauma, grief, isolation during the time of a global pandemic. Wake Up Narcolepsy's Executive Director, Claire Crisp has a conversation with Dr. Cynthia Eriksson, Associate Professor of Clinical Psychology and Chair the PsyD Program at Fuller Theological Seminary and Dr. Alison Wong, Assistant Professor of Marriage and Family Therapy and Director of Research of Fuller Psychological and Family Services at Fuller Theological Seminary. Claire, Dr. Eriksson and Dr. Wong cover how to recognize the emotions you are feeling during a traumatic global pandemic, tips on how to acknowledge your feelings, how to reduce stress, how to grieve and finally ways to find support. This conversation specifically focused on people with narcolepsy and families with PWN. 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 Apple Podcasts.

Part of Wake Up Narcolepsy’s mission is to provide supportive resources for people with Narcolepsy and their families. During this time of massive daily life alterations, we want to continue to offer those resources. We are all going through a traumatic event together and as we are adapting to a new normal within our homes some may find it difficult to create structure. We created a miniseries called Doing Life During COVID-19 to address different aspects of daily life we may need extra support with during this time. Our fourth episode in our Doing Life During COVID-19 miniseries is addressing food + nutrition during the pandemic. Wake Up Narcolepsy's Executive Director, Claire Crisp has a conversation with Andre Royal, chef, entrepreneur, author and PWN. They discuss what food to focus on to boost your immune system, to give yourself grace, tips on how to meal prep, and staple pantry items to have. Andre and Claire also talk about Andre’s new coloring book that he authored and his son illustrated- The Hippo Critic. It may be a great way to relieve stress while practicing safer at home protocols. Here are some websites he recommends you check out to help you with cooking at home! AllRecipes.com ( tip: check the ratings and the comments of recipes you are interested in cooking) Cookie + Kate Serious Eats- Corona Virus Cooking Guide on Beans (Excellent tips overall, even on technique) MadCap Narcolepsy (Narcolepsy  Dietary & Lifestyle Changes) You can follow Andre on Instagram and Facebook. You can learn more about his new book The Hippo Critic on Instagram, Facebook and Twitter. 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 Apple Podcasts.

Part of Wake Up Narcolepsy’s mission is to provide supportive resources for people with Narcolepsy and their families. During this time of massive daily life alterations, we want to continue to offer those resources. We are all going through a traumatic event together and as we are adapting to a new normal within our homes some may find it difficult to create structure. We created a miniseries called Doing Life During COVID-19 to address different aspects of daily life we may need extra support with during this time. Our third episode in our Doing Life During COVID-19 miniseries is addressing pediatric care during the pandemic. Wake Up Narcolepsy's Executive Director, Claire Crisp has a conversation with Dr. Kiran Maski, Director of Sleep Clinic and Department of Neurology at Boston Children’s Hospital, about pediatric treatment during the time of COVID-19. They discuss symptom management, the effects of homeschooling, what over the counter medication you should consult with your doctor about if your child is showing symptoms of the virus, and what research Dr. Maski is currently focusing on. Please see details below if you would like you and your child would like to participate in her current focus group. Focus Group Participants Needed to Develop a Pediatric Narcolepsy Patient Reported Outcomes Scale (PN-PROS) Narcolepsy is a chronic neurologic condition that tends to occur most frequently during childhood and adolescence. Currently there is no tool to assess the symptoms of narcolepsy that most significantly impact daily functioning of children with narcolepsy. We are conducting a study to develop a clinical tool health care providers can use to assess pediatric narcolepsy symptoms. Pediatric patients with narcolepsy and their parent/guardian are invited to take part in a 90 minute on-line, recorded focus group to discuss narcolepsy symptoms and the impact of the symptoms. As a thank you for participating in the focus group, you will receive a $50 gift card. Who is eligible for this study? Patients between the ages of 8-12 years with a diagnosis of narcolepsy AND one parent/guardian Participants must be able to understand the purpose of the study If you would like more information on study requirements, compensation, or eligibility, please call the Neurology Sleep Research team at 617-919-6212 or email us at NeuroSleepResearch-dl@childrens.harvard.edu   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 Apple Podcasts.

Part of Wake Up Narcolepsy’s mission is to provide supportive resources for people with Narcolepsy and their families. During this time of massive daily life alterations, we want to continue to offer those resources. We are all going through a traumatic event together and as we are adapting to a new normal within our homes some may find it difficult to create structure. We created a miniseries called Doing Life During COVID-19 to address different aspects of daily life we may need extra support with during this time. Our second episode in our Doing Life During COVID-19 miniseries is addressing exercise and movement. In this episode, Wake Up Narcolepy's Executive Director, Director, Claire Crisp interviews Belle Hutt, a personal trainer, author and PWN about the importance of exercise and movement for PWNs. You can follow Belle at @bellehut on Instagram and you can get her book #EnergeticNarcoleptic on her website www.bellehutt.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 Apple Podcasts.  

Part of Wake Up Narcolepsy’s mission is to provide supportive resources for people with Narcolepsy and their families. During this time of massive daily life alterations, we want to continue to offer those resources. We are all going through a traumatic event together and as we are adapting to a new normal within our homes some may find it difficult to create structure. We created a miniseries called Doing Life During COVID-19 to address different aspects of daily life we may need extra support with during this time. Our first episode in our  Doing Life During COVID-19 miniseries is addressing mental health and mindfulness practices. In this episode, Wake Up Narcolepy's Executive Director, Claire Crisp has a conversation with Dr. Jason Ong, Associate Professor in the Department of Neurology at Center for Circadian and Sleep Medicine at Northwestern University Feinberg School of Medicine, about mental health, depression, anxiety and mindfulness for people with narcolepsy, especially during this time of safer at home.

Understanding Narcolepsy and Hypersomnia: Insights and Perspectives at Education Day at Sleep Expo 2019. In this podcast, Claire Crisp, Executive Director at Wake Up Narcolepsy, tells us how "in Collaboration with the Hypersomnia Foundation and World Sleep, Wake Up Narcolepsy is hosting an Education Day at Sleep Expo 2019 for people with narcolepsy and/or idiopathic hypersomnia, their families, educators, clinicians and researchers."  Leading experts will be sharing their latest research on treatment options, impact of narcolepsy and idiopathic hypersomnia, comorbidity and how to live a full life with narcolepsy and hypersomnia. Crisp tells us how this day "will offer a unique opportunity for people with narcolepsy and/or idiopathic hypersomnia to mix and mingle with sleep doctors, clinicians and researchers from World Sleep 2019." Crisp shares with us that presentations include "Dr. Thomas Scammell, Dr. Brian Murray, Dr. Yves Dauvilliers, Kelsey Biddle, Dr. Indra Narang, and Shelly Weiss who will address pertinent sleep disorder issues including mental health, transitional care, lifestyle, current research and treatment. There will also be special breakout panel discussions focusing on narcolepsy and idiopathic hypersomnia." In registering for Wake Up Narcolepsy Education Day at Sleep Expo 2019 you will ALSO have access to Sunday, September 22, 2019 Sleep Expo Program– including Public Lecture Series, Facilitator-led Discussion, and Sleep-related Author Tables. To register for this free event, please click here.

Claire Crisp, Executive Director Wake Up Narcolepsy, Inc. The Sleep Forum is proud to provide media coverage for the Wake Up Narcolepsy Conference in Los Angeles on Saturday, January 19, 2019.   The Conference is an informative one day conference in Pasadena with leading experts in the field of Narcolepsy.  Also attending are other narcolepsy non-profit groups, pharma companies and people with narcolepsy.  Dr. Emmanual Mignot,  a sleep researcher and director of the Stanford Center for Sleep Sciences and Medicine, at Stanford University, is keynote speaker and will be sharing the latest research and treatment options. In this podcast, Claire Crisp, Executive Director at Wake Up Narcolepsy, tells us her personal story with Narcolepsy, some of the goals and achievements at Wake Up Narcolepsy and what to expect at the Education Day on January 19, 2019. Crisp tells the listeners that "she came from London, England to California eight years ago when her daughter Mathilda was diagnosed with Narcolepsy after receiving a routine vaccination."  Crisp wrote a book, Waking Mathilda, because she wanted to give her daughter a voice when she was too young to tell her own story.  Mathilda is now 12 years old and already an advocate for narcolepsy awareness. Exhibitors at the conference is Takeda, Harmony Biosciences, Avadel, Jazz, Hypersomnia Foundation and The Sleep Forum.   Please make sure to check back with us following the conference for full coverage from speakers and exhibitors.    

Welcome to the new season of Narcolepsy 360! Claire Crisp is an author, advocate, Executive Director at Wake Up Narcolepsy and mother of a child living with narcolepsy. In this episode, Claire shares her journey on deciding to write a memoir about the process to get her daughter, Matilda, properly diagnosed with narcolepsy. She also shares that through writing the book, her passion and dedication to supporting and advocating for families who are navigating life narcolepsy grew. So much so that she took on the role of Executive Director at Wake Up Narcolepsy! Claire also tells us some exciting things that are happening at Wake Up Narcolepsy and how you can get involved. You can follow Claire at @londonerinla on Instagram, @clairecrisp1 on Twitter, and @claireccrisp on Facebook. Be sure to check out Claire’s book and blog at claireccrisp.com. If you are interested in any of the events, services, and support Wake Up Narcolepsy offers, please go to www.wakeupnarcolepsy.org. You can follow us at @narcolepsy_360 on Instagram and  @wakeupnarcolepsy on Instagram, Twitter, and Facebook. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes. Narcolepsy 360 is a production of Wake Up Narcolepsy, in partnership with Jazz Pharmaceutical.

Our second live LIBERTY Sessions event from the Santa Monica WeWork offices. What do you get when a graphic designer, an author, an editor and an attorney all congregate together? A killer night of boss babes breaking it down! Listen in as Nada Jones interviews this stellar panel of entrepreneurial women. Each shares her story, successes, challenges and tips for all women who are thinking about starting their own venture or those needing a little motivation to stay the course.  Join Sarah Magidoff of Canopy, Claire Crisp, author of Waking Mathilda, Sarah Dubbledam of Darling Media, and Celeste Liversidge of  TruAdopt in this rich conversation. Warning, the ladies in this episode will have you laughing out loud and moved to tears--be prepared! Want to learn more about our panel? Here’s all the info:  Sarah Magidoff: @madebycanopy on Instagram and Pinterest. Check out Sarah’s graphic design services at www.madebycanopy.com. Claire Crisp: @londonerinla on Instagram,  @clairecrisp1 on Twitter, and @claireccrisp on Facebook. Check out Claire’s book and blog at claireccrisp.com. Sarah Dubbeldam: @darling and @ladydubbs on Instagram, @darlingmag on Twitter, and @darlingmagazine on YouTube. Be sure to go to www.darlingmagazine.org. Celeste Liversidge: @tru.adopt on Instagram and @truadopt on Facebook. Be sure to go to www.truadopt.org to check out their services. Don't forget to follow us at @libertyforher on Instagram, Twitter, and Facebook. Please let us know your thoughts about this episode by using the hashtag #libertysessions.

Claire Crisp is the Author of Waking Matilde, a memoir. She is also an Advocate for both Narcolepsy and self-publishing. In this episode, hear how Claire was led to share her family’s life changing experience with chronic illness.  Claire, a physical therapist and homeschool teacher, didn’t set out to become an author. Story telling became a vehicle for her to process her family’s experience, and has since become a way to give a voice to many young chronically ill children and their families. Her passion to bring a voice to the voiceless birthed a book and a blog. It also led her to learn the ins and outs of the self-publishing industry.  Claire offers insight on the entrepreneurial aspects of authoring and self-publishing. Hear how her book and blog are just the beginning in building her platform. Claire’s honest presence encourages you to find ways to share your own story. Please follow Claire at @londonerinla on Instagram, @clairecrisp1 on Twitter, and @claireccrisp on Facebook. Be sure to check out Claire’s book and blog at claireccrisp.com. Don't forget to follow us at @libertyforher on Instagram, Twitter, and Facebook. Please let us know your thoughts about this episode by using the hashtag #libertysessions.

Dana criticizes Paul Ryan and others for using the same arguments to defend their healthcare bill as Obamacare used. Claire Crisp joins Dana and you don't want to miss hearing a first hand account of what a socialized healthcare system really does.