Podcasts about wake up narcolepsy

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Best podcasts about wake up narcolepsy

Latest podcast episodes about wake up narcolepsy

The Project Sleep Podcast
Becoming a Narcolepsy Advocate - Narcolepsy Nerd Alert Series Ep. 3

The Project Sleep Podcast

Play Episode Listen Later Aug 1, 2022 64:50


So you’d like to advocate for narcolepsy, but aren’t sure where to start? In this episode, we are joined by two incredible narcolepsy advocates, Ana E. Lara and Matthew Horsnell. Together, we talk about the power of YOUR story and break down narcolepsy advocacy into three categories: self-advocacy, raising your voice publicly, and legislative advocacy. Ana E. Lara is a poet and stay-at-home mom who is passionate about writing. She is a person with narcolepsy, who advocates for sleep health and serves on the board of directors for Project Sleep. Matthew Horsnell is a father of three and science nerd living with type 1 narcolepsy with cataplexy. He is a Rising Voices of Narcolepsy trained speaker and a facilitator for Wake Up Narcolepsy online small groups. Download the Becoming a Narcolepsy Advocate Toolkit for more resources: https://bit.ly/becoming-a-narcolepsy-advocate The Narcolepsy Nerd Alert series invites listeners to dive deeper into specific topics relevant to living with narcolepsy. https://project-sleep.com/narcolepsy-nerd-alert/

The Project Sleep Podcast
Becoming a Narcolepsy Advocate II Narcolepsy Nerd Alert Series Ep. 3

The Project Sleep Podcast

Play Episode Listen Later Aug 1, 2022 64:50


So you’d like to advocate for narcolepsy, but aren’t sure where to start? In this episode, we are joined by two incredible narcolepsy advocates, Ana E. Lara and Matthew Horsnell. Together, we talk about the power of YOUR story and break down narcolepsy advocacy into three categories: self-advocacy, raising your voice publicly, and legislative advocacy. Ana E. Lara is a poet and stay-at-home mom who is passionate about writing. She is a person with narcolepsy, who advocates for sleep health and serves on the board of directors for Project Sleep. Matthew Horsnell is a father of three and science nerd living with type 1 narcolepsy with cataplexy. He is a Rising Voices of Narcolepsy trained speaker and a facilitator for Wake Up Narcolepsy online small groups. Download the Becoming a Narcolepsy Advocate Toolkit for more resources: https://bit.ly/becoming-a-narcolepsy-advocate The Narcolepsy Nerd Alert series invites listeners to dive deeper into specific topics relevant to living with narcolepsy. https://project-sleep.com/narcolepsy-nerd-alert/

Worcester Business Connect
030: Wake Up Narcolepsy

Worcester Business Connect

Play Episode Listen Later Jul 21, 2022 13:45


Join us in this important episode as we enter into the world of Narcolepsy. Monica Gow, Co-Founder of Wake Up Narcolepsy, a Worcester-based non-profit organization dedicated to driving narcolepsy awareness, education and research towards improved treatments and cures.

January Jones sharing Success Stories
January Jones welcomes One Door Closes with Ken McDonnell & Tom Ingrassia

January Jones sharing Success Stories

Play Episode Listen Later Mar 25, 2022 52:00


January Jones welcomes One Door Closes with Ken McDonnell   Broadcast in Self Help 8 years ago   Ms January Jones follow FEATURED HOST  h:176001 s:6015307 archived Play      tomingrassiajaredchrudimskykenmedonnellconedooropens One Door Closes January Jones welcomes Tom Ingrassia and Jared Chrudimsky co-author's of When One Door Closes: Overcoming Adversity By Following Your Dreams sharing true life stories of people who have overcome insurmountable obstacles in order to live their dreams. Today's interview features Ken McDonnell who is a husband, a father, triathlete and public relations director for Wake Up Narcolepsy, a nonprofit supporting awareness for Narcolepsy awareness and research.     

Narcolepsy 360
Narcolepsy 360: Tatiana Maria Corbitt

Narcolepsy 360

Play Episode Listen Later Aug 12, 2021 29:31


Tatiana Maria Corbitt is a writer, artist and advocate. Tatiana is also a person with Type 1 Narcolepsy. In this episode, Tatiana and Claire discuss how the onset of her symptoms occurred after having the flu, while in the first year of college. She was diagnosed in 2017 while studying Applied Biological Studies. Since she experienced such a drastic shift while in the midst of her college career, Tatiana had challenges navigating her studies, managing her symptoms, receiving appropriate accommodations and maintaining her mental health. Initially, Tatiana's family was supportive throughout her diagnosis process, but coming to terms that there wasn't a cure for narcolepsy has caused a strain within the familial relationships. Their hope for her to become a doctor was thwarted when Tatiana couldn't find a university with the appropriate disability resource office available that would advocate for her in her studies. Tatiana currently writes for Health Union about living with narcolepsy.  Tatiana shares with Claire her current medication and the value of having a service dog. Her service dog, Kida, assists her in so many different facets which helps Tatiana feel safe while managing symptoms.  Because Tatiana's narcolepsy caused such a drastic change in her quality of life, she has had to navigate changes in friendship and familial relationships. Thankfully, she has found community in the Wake Up Narcolepsy Online Support Groups. She recently became a facilitator for a WUN Support Group - LGBTQIA Support Group. You can follow Tatiana on @saltytatertats on Instagram. Her art Instagram is @studioslumber. You can check out her writings about living with narcolepsy here.  Tatiana says, “I recommend the Wake Up Narcolepsy Narcolepsy LGBTQIA+ Support Group that I lead on Fridays. They also have other support groups for people with Narcolepsy that I've participated in and highly recommend, especially for people that are newly diagnosed or who don't have support systems at home.”  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.

Narcolepsy 360
Narcolepsy 360: Thomas Gow

Narcolepsy 360

Play Episode Listen Later Jul 29, 2021 40:44


Thomas Gow is a Client Experience Analyst at TruDataRx. Thomas is also a person with Type 1 Narcolepsy and one of the inspirations to the creation of Wake Up Narcolepsy. In this episode, Thomas shares his experience of diagnosis at the age of 10 and how it wasn't until he began to experience cataplexy that something bigger was going on beyond just being sleepy. He shares how he navigated his educational journey from middle school to grad school, playing sports and now working a full-time job. In his acceptance of narcolepsy, he took logical risks to see how his body could handle different life experiences. Routines, goals, support systems and logical risks have all played a part in helping him embrace his narcolepsy.  He believes narcolepsy has allowed him to grow in a way that gives him a completely different perspective on the world. He says, “[Narcolepsy] is along the ride to where you want to go in life.” It isn't driving you.  You can follow Thomas @tgow14 on Instagram and on Facebook. 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.

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Narcolepsy 360
Narcolepsy 360: Tove Maren Stakkestad

Narcolepsy 360

Play Episode Listen Later Jul 15, 2021 38:18


Tove Maren Stakkestad is a Danish American Writer and Blogger. She is currently sharing her experience of being a mom of 4 boys  on her blog Mama In The Now. Tove is also a person with Type 1 Narcolepsy. In this episode, Tove reflects that she believes both her father and grandfather had narcolepsy and she had a sleepy childhood. When her mother took her to the doctors they thought it was childhood epilepsy and didn't require further treatment. When she started falling asleep during client meetings, she sought out doctor's insight about her sleepiness. It was then she was diagnosed with Type 1 Narcolepsy. As her fourth child was on the way, Tove's husband suggested that she start a blog as a means to creating an income and assist her in the ability to stay home and raise her kids. She writes about motherhood with honesty and humor.  Tove is currently unmedicated and lives a lifestyle she calls unapologetic self-care. There is so much to learn through Tove's blog but Claire asks specifically about a post where Tove describes how narcolepsy has made her a better parent.   You can follow Tove @mamainthenow on Instagram, Facebook, Twitter and Pinterest. You can also check out her blog Mama In the Now here. Tove recommends joining The Facebook Group: Real Moms in the Now- A fun group for mothers from all stages of motherhood. Also, The Hygge Movement- This is a cozy drama-free group of women who embrace the Danish lifestyle of “hygge” (mindfulness and coziness). We share book recommendations, arts and crafts - just all the things that make you feel warm and fuzzy inside. 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.

Narcolepsy 360
Narcolepsy 360: Desireé Gorbea-Finalet

Narcolepsy 360

Play Episode Listen Later Jul 1, 2021 30:19


Desireé Gorbea-Finalet is a person with Type 1 Narcolepsy and a student of Peace and Conflict Studies.  In this episode, Claire and Desireé discuss how because she was labeled as a “good sleeper” as a young child that it may have contributed to a delayed diagnosis. Growing up in Puerto Rico, her family had a history of migraines so when she sought out help her doctors and neurologists focused on the migraines rather than her excessive daytime sleepiness.  Despite struggling with excessive daytime sleepiness, Desireé was always super productive during her wakefulness. She participated in extracurricular activities and completed both high school and her undergrad within three years. In 2017, after the destructive effects of Hurricane Maria, Desireé came to the States. Since coming to the States she has been able to receive better narcolepsy care and get plugged into a local support group. Desireé encourages everyone to listen to their bodies and intuition and to not give up advocating for yourself until you find out what is “wrong” with your body.  You can follow Desireé @uniboricua on Instagram. She recommends the following Facebook groups -- Foothills Narcolepsy Support Group (Specifically for individuals living in North-Western North Carolina and Southern Virginia), Narcolepsy Humor, and Narcolepsy Support Group. 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.

Narcolepsy 360
Narcolepsy 360: Dr. Michael Grandner

Narcolepsy 360

Play Episode Listen Later Jun 10, 2021 45:17


Dr. Grandner is the Director of the Sleep and Health Research Program at the University of Arizona, Director of the Behavioral Sleep Medicine Clinic at the Banner-University Medical Center, and an Associate Professor in the Department of Psychiatry at the UA College of Medicine, with joint appointments in the Departments of Medicine, Psychology (UA College of Science), Nutritional Sciences (College of Agriculture and Life Sciences), and Clinical Translational Science. His research focuses on how sleep and sleep-related behaviors are related to cardiovascular disease, diabetes, obesity, neurocognitive functioning, mental health, and longevity. In this episode, Claire and Dr. Grandner discuss how although he is a clinical psychologist, his focus is on sleep behavior. He is interested in understanding collectively our relationship with sleep and what causes disruptions in our sleep and therefore affects our day-to-day functions. Dr. Grandner shares what his lab is currently studying, but also deep dives into how sleep greatly affects our mental health, mental wellness, memory and mental acuity. He shares his insight on how diet, nutrition and sleep all intricately interact. Dr. Grandner is constantly asking, “How do we improve people's sleep?” We really appreciate learning about sleep and sleep health from a sleep behavioral approach, thank you Dr. Grandner for your time and sharing with our community.  To learn more about Dr. Grandner's research and work you can check his website. You follow Dr. Grandner @michaelgrandner on Twitter and @drgrandner on Facebook. 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.

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Narcolepsy 360
Narcolepsy 360: Nicole Kenyon

Narcolepsy 360

Play Episode Listen Later Jun 3, 2021 51:55


Nicole Kenyon is a person with Type 1 Narcolepsy. She is also a multi-faceted narcolepsy advocate. She is an author of a memoir, a blogger, legislative advocate, personal trainer and the face of @fitniknarcoleptic Instagram where she shares workout routines. In this episode, Nicole shares how she struggled with excessive sleepiness most of her childhood, but because she was very athletic it was often glossed over. Multiple times she went to doctors seeking help but whether it was her weight or her active lifestyle, they didn’t listen and her diagnosis was delayed. It wasn’t until college while talking to a fellow rugby teammate who recently was diagnosed with narcolepsy did she find the answer to her experience as well. Despite knowing she had narcolepsy it still took a while before getting diagnosed, and the doctor who initially oversaw her treatment didn’t provide effective care. Today, Nicole has a great sleep specialist. Because of her arduous experience, Nicole is passionate about advocating for CWN.  Nicole in early 2020 was diagnosed with MS. This has brought about new questions on whether MS caused her narcolepsy. Nicole has invested in herself through fitness and a healthy lifestyle. She offers insight into the importance of working out for health reasons and learning to love yourself.  You can follow Nicole at @fitniknarcoleptic on Instagram. You can read her memoir here Part 1 and Part 2. You can also read her blog here. 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.

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Narcolepsy 360
Narcolepsy 360: Matthew Horsnell

Narcolepsy 360

Play Episode Listen Later May 20, 2021 44:43


Matthew Horsnell is a person with Type 1 Narcolepsy. He also is a multi-faceted narcolepsy advocate. He’s a speaker, a blogger, legislative advocate and narcolepsy support group leader. In this episode, Matthew and Claire discussed how becoming a dad pushed him to figure out his extreme daytime sleepiness that he dealt with throughout his childhood.  He, in his words, “passed the test with flying colors,” and was diagnosed with Type 1 Narcolepsy.  After navigating living with narcolepsy, being a parent and generally being an adult for a few years, Matthew realized he wanted to be vocal about his narcolepsy and spread narcolepsy awareness. Matthew is a generous narcolepsy advocate. He first entered into advocacy through the Know Narcolepsy awareness campaign. He participated in Project Sleep’s Rising Voices of Narcolepsy Program to help him confidently speak about living with narcolepsy. Today he advocates by speaking at events, webinars, and participating as a legislative advocate in DC. He writes blogs on Health Union about living with narcolepsy. He facilitates a weekly online support group through Wake Up Narcolepsy.  He also is an active social media advocate posting and spreading awareness with the hashtag = #worldsstrongestpersonhavingnarcolepsywithcataplexy. Matthew shares about how exercise, therapy, support groups, and connecting with the narcolepsy community have brought about a fuller life. We really appreciated Matthew’s honesty and empathy that he offers in sharing his experiences living with narcolepsy. You can follow Matthew at @mhorsnell on Instagram and  @matthorsnell on Twitter. You can read his writings about narcolepsy for Health Union here. You can watch his Rising Voices of Narcolepsy Story Sharing Event. You can also watch his presentation, "Social Support and Counseling: Navigating Narcolepsy And Mental Health Comorbidities" during Wake Up Narcolepsy REAL: Navigating Narcolepsy and Mental Health Education Day Webinar. 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.

Narcolepsy 360
Narcolepsy 360: Grace McGinnis

Narcolepsy 360

Play Episode Listen Later May 6, 2021 30:04


Grace McGinnis is a college student studying Pre Med, a Division 1 college athlete and also a person with Type 1 Narcolepsy.  In this episode, Grace and Claire discuss how Grace functioned as a “sleepy child” and how she was aware at a young age that her experience of sleepiness wasn’t normal. In her sophomore year of high school, her health and performance as a swimmer were deteriorating. She sought insight from doctors. Around the 5th doctor, they suggested she get a sleep test. She was diagnosed with Type 1 Narcolepsy.  Now, Grace is in college and is also a competitive swimmer for the University of Miami! Grace candidly shares how she navigates her daily life of practice, school and friendship. She recommends structure, schedule and naps! She also offers insight into what it has been like to be so transparent about her narcolepsy. Grace’s honesty is so welcoming and it is no surprise as she has created a blog called Sleep G, to share her experience with sleep health and narcolepsy. You can follow Grace at @sleepyg_zzz and @Grace_McGinnis on Instagram. She recommends joining narcolepsy groups on Facebook because as she says, “ It’s a great way to connect with people and learn more.” 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.

Narcolepsy 360
Narcolepsy 360: Dr. George Church

Narcolepsy 360

Play Episode Listen Later Apr 22, 2021 26:02


Dr. George Church is a Professor at Harvard & MIT, co-author of 580 papers, 143 patent publications & the book "Regenesis"; developed methods used for the first genome sequence (1994) & million-fold cost reductions since (via fluor-NGS & nanopores), plus barcoding, DNA assembly from chips, genome editing, writing & recoding; co-initiated BRAIN Initiative (2011) & Genome Projects, machine learning for protein engineering, tissue reprogramming, organoids, xeno-transplantation, in situ 3D DNA, RNA and  protein imaging.  He is also a person with Type 1 Narcolepsy.  In this episode, Dr. Church shares his diagnosis story which occurred alongside his daughter’s diagnosis of narcolepsy. He offers insight on how he navigated his symptoms prior to diagnosis. He also shares how he currently manages his symptoms to live optimally at home and in his thriving lab. Claire was fortunate enough to have Dr. Church explain what his lab focuses on and if he has any future plans to conduct narcolepsy research.  You can follow Dr. George Church on Twitter @geochurch and learn more about his research and work here. 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.

Narcolepsy 360
Narcolepsy 360: Ginna Freehling

Narcolepsy 360

Play Episode Listen Later Apr 8, 2021 28:12


Ginna Freehling is a neuroscience graduate and works in cancer clinical research at a biotech company. She is also a PWN. In this episode, Ginna shares how at the age of twenty she started experiencing symptoms of narcolepsy. In the process of trying to figure out what was going on, she was discouraged by her sleep specialist to not seek a formal diagnosis. For the next few years, she managed her symptoms on her own. Finally, as symptoms worsen she was able to get a sleep test at Stanford and was diagnosed with Type 1 narcolepsy. Ginna offers insight on medication titration, her experience with disclosing her diagnosis with work, navigating friendship, and her passion for sleep education. She says, “As a society, we don’t put enough emphasis on the value of sleep.” You can follow on Instagram @Ginna24. She says, “The XYREM/XYWAV Facebook group has been helpful to learn about others' experiences in switching to XYWAV from XYREM.” Ginna also offers, “In general I would say exercise and a diet low in simple carbohydrates can help with EDS. I follow a gluten-free diet due to a wheat allergy and IBS but have subsequently found that it helps my daytime wakefulness as well. Individuals with resources surrounding this include Belle Hutt @bellehutt on Instagram and Gina Dennis' page madcapnarcolepsy.com.” 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.

Narcolepsy 360
Narcolepsy 360: Dr. Jennifer Gudeman

Narcolepsy 360

Play Episode Listen Later Mar 25, 2021 25:29


Dr. Jennifer Gudeman is the Vice President, Medical and Clinical Affairs at Avadel Pharmaceuticals. In this episode, Dr. Gudeman and Claire discuss how Avadel Pharmaceuticals is seeking FDA approval for a once-nightly form of sodium oxybate (FT218) for the treatment of EDS and cataplexy in people with narcolepsy.  Dr. Jennifer Gudeman was appointed Vice President, Medical and Clinical Affairs at Avadel in December 2020. Avadel is a global biopharmaceutical company committed to improving the standard of care for people with narcolepsy. Dr. Gudeman and her team are focused on publications of primary and secondary data from the phase 3 REST-ON trial of investigational once-nightly FT218 and building out the medical affairs programs. They are also leading an ongoing open-label extension clinical study, called Restore, to evaluate the long-term safety and tolerability of investigational once-nightly FT218. Dr. Gudeman has published numerous peer-reviewed papers and provided domestic and international presentations on partnership with industry for drug development. In 2017, Dr. Gudeman received the Healthcare Businesswomen’s “Rising Star” award. During her career, she has led or contributed to six commercial product launches and three clinical development programs, as well as led interactions with medical societies and patient advocacy organizations to help ensure that commercial medications fulfill their clinically proven therapeutic benefits to patients and providers. Prior to joining Avadel, Dr. Gudeman was Vice President, Medical Affairs at AMAG Pharmaceuticals, overseeing a team of medical science liaisons and scientific communications. Dr. Gudeman graduated summa cum laude with a bachelor’s degree in pharmacy and magna cum laude with a doctorate in pharmacy from St. Louis College of Pharmacy in 1999 and 2000, respectively. To find out more information about Avadel’s Restore Study please go here. 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.

Narcolepsy 360
Narcolepsy 360: Travis Pavlicek

Narcolepsy 360

Play Episode Listen Later Mar 11, 2021 30:07


Travis Pavlicek is a husband, father of three and his son Cruz is a child with narcolepsy. In this episode, Travis shares how the onset of Cruz’s narcolepsy symptoms escalated within a span of 3 weeks. He details how his family struggled to find a doctor who knew what was going on with Cruz until finally they drove through the night to Mayo Clinic in Rochester, MN and got a consultation from Dr. Kotagal. Travis also shares how the diagnosis of narcolepsy type 1 affected the entire family. Claire and Travis reflect on the co-morbid and behavior issues that arise for children with narcolepsy. Also how while establishing accommodations for CWN there is a lot of education involved to help administration and teachers understand narcolepsy.  Travis really advocates for parents with CWN to connect with other parents on Facebook groups, to read about children and adult experiences, and be honest with your immediate community. Finally, Travis shares how WUN’s Narcolepsy Family Camp had a profound effect on Cruz. You can follow Travis on Instagram @travispavlicek and on Facebook @travis.pavlicek . Here are some Facebook groups that Travis recommends: Narcolepsy Support Group, Wake Up Narcolepsy, Parents of Children with Narcolepsy, XYREM/XYWAV Support Group, Project Sleep, Narcolepsy Network, More Than Tired and Know Narcolepsy.  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.

Narcolepsy 360
Narcolepsy 360: Shamarla Morgan

Narcolepsy 360

Play Episode Listen Later Feb 25, 2021 26:55


Shamarla Morgan is a PWN and a narcolepsy advocate. In this episode, Shamarla shares how despite a self-diagnosis of narcolepsy type 1 within the first year of her symptoms, it took four years for her to receive a proper diagnosis. She experienced many frustrating interactions with doctors who didn’t take her communication about the disorder and her symptoms seriously. They chose to test her for other issues.  What Shamarla experienced was medical racism and part of her narcolepsy advocacy is to help raise awareness and educate doctors so that other Black Americans and people of color will be listened to when they communicate their symptoms. Shamarla also shares her experience with not taking medication and the decision to take medication when she was in college. Shamarla is really in tune with her body and her biggest lifestyle recommendation is to take naps. Sleep is medicine! You can follow Shamarla on Instagram @sincerelyymorgan and on Facebook @shamarla.morgan. 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.

Narcolepsy 360
Narcolepsy 360: Dr. John Peever

Narcolepsy 360

Play Episode Listen Later Feb 11, 2021 28:28


 Dr. John Peever is a professor of Cell and Systems Biology at the University of Toronto. In this episode, Dr. Peever shares why he got into narcolepsy and other sleep disorders research. He shares what his latest research is focusing on and how sleep research may influence future narcolepsy treatments.  In his efforts through research and the Canadian Sleep Society, he highlights how essential sleep is part of daily lives and our overall health. You can learn more about Dr. John Peever’s research here.  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.

Narcolepsy 360
Narcolepsy 360: Ginger Zee

Narcolepsy 360

Play Episode Listen Later Jan 28, 2021 47:24


Ginger Zee is the chief meteorologist for ABC News, author, advocate and a person with narcolepsy.  In this episode, Ginger shares her journey to being diagnosed with narcolepsy type 2. She also shares about how her mental health was affected by her drug prescriptions to her narcolepsy symptoms.  Claire and Ginger discuss how she handles her narcolepsy while always having to be prepared to travel for work as a chief meteorologist for ABC News when a major weather event takes place. Ginger details her pregnancy experiences and being a mother of two. On top of her work as a meteorologist, Ginger is also an author. Ginger has written a memoir, Natural Disaster--I cover them, I am one, and a YA fiction series called Chasing Helicity. Ginger is an advocate for both narcolepsy awareness and encouraging young people to go into STEM. You can follow Ginger at @ginger_zee on Instagram, @gingerzeetv on Facebook, and @ginger_zee on Twitter. You can check out her books on her website. 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.

R is for Rare
1. Narcolepsy ft. yours truly, Annie Watson!

R is for Rare

Play Episode Listen Later Jan 19, 2021 56:04


In today's episode, I will be talking about narcolepsy, a rare sleep disorder, and share how narcolepsy has affected my life since 2009. I will be talking about what narcolepsy is, what causes it, how it is diagnosed, as well as what my life was like leading up to and following my diagnosis in April 2010. If you want to hear more about rare diseases, subscribe to R is for Rare wherever you get your podcasts, and be sure to leave a review and share this podcast on social media! Sources used for this episode: National Institute of Neurological Disorders and Stroke from the National Institute of Health - https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Narcolepsy-Fact-Sheet Narcolepsy Fast Facts from Narcolepsy Network - https://narcolepsynetwork.org/about-narcolepsy/narcolepsy-fast-facts/ Wake Up Narcolepsy - https://www.wakeupnarcolepsy.org Narcolepsy Diagnosis from Wake Up Narcolepsy - https://www.wakeupnarcolepsy.org/about/diagnosis/ Treatments for Narcolepsy - https://www.mayoclinic.org/diseases-conditions/narcolepsy/diagnosis-treatment/drc-20375503 --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app --- Send in a voice message: https://anchor.fm/annie-watson/message

Conversing
86 - Claire Crisp on Narcolepsy

Conversing

Play Episode Listen Later Nov 24, 2020 38:48


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.

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Narcolepsy 360
Narcolepsy 360: Dr. Indra Narang

Narcolepsy 360

Play Episode Listen Later Sep 17, 2020 30:14


Dr. Indra Narang is the Director of Sleep Medicine at the Hospital for Sick Children, in Toronto, Canada. She is also an Associate Professor at the University of Toronto. Dr. Narang specializes in many sleep disorders including pediatric obstructive sleep apnea and narcolepsy. She established the first pediatric narcolepsy clinic in Toronto which is now a large multi-disciplinary team effort.  In this episode, Dr. Narang talks about her journey into pediatric sleep medicine. She shares what new medicines she is interested in and how it will affect children with narcolepsy’s symptom management. She also shares her current research focuses on the impact of narcolepsy on mental health in children and their families. Dr. Narang is qualitatively exploring the symptoms of narcolepsy on the quality of life and functioning in adolescents. 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.

Narcolepsy 360
Narcolepsy 360: Emily Kreuziger

Narcolepsy 360

Play Episode Listen Later Sep 3, 2020 39:57


Emily Kreuziger is a mom, a professional snowmobiler and a person with narcolepsy.  In this episode, Emily shares her long diagnosis process. After being diagnosed and learning more about narcolepsy, she realized her first symptoms started 10 years prior to her actual diagnosis. She also shares how she went from originally being diagnosed with IH, then narcolepsy type 1 to now her proper diagnosis of narcolepsy type 2. As a new mom, Emily generously shares her experience of becoming pregnant, her decision to go off meds, the delivery and now, what it’s like to be back on medication with a baby. Emily also is a professional snowmobiler. It’s a family affair, which is awesome, but Emily goes into detail on how she manages her narcolepsy symptoms and energy as she trains and races on a snowmobile.  You can follow Emily at @kreuziger_racing on Instagram, Kreuziger Racing and Emily Kreuziger on Facebook, and @girlswithsnowmobiles on YouTube. 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.

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Narcolepsy 360
Narcolepsy 360: Gary Rutter

Narcolepsy 360

Play Episode Listen Later Aug 20, 2020 41:01


Gary Rutter is a sheep shearer, a dad and a person with narcolepsy. You read it right, a sheep shearer, a job so physical that you burn the same amount of calories as if you just ran a marathon. In this episode, Gary shares how he came about doing his unique occupation. He also shares that he was diagnosed with Type 1 Narcolepsy just a few years ago despite experiencing symptoms since he was in middle school. Since his proper diagnosis, Gary has been navigating narcolepsy treatment, his occupation, and most recently becoming a dad. He shares how he has been working to have his sleep schedule in line with his sons. Gary is very intune with his body and has been experimenting and learning ways to be efficient with his energy use. We must say it’s very interesting and inspiring. You can follow Gary at @gary.rutter82 on Instagram, @rut82 on Facebook and at @garyrutter13 on Twitter.  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.

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Narcolepsy 360
Narcolepsy 360: Dr. Deborah Hartman

Narcolepsy 360

Play Episode Listen Later Jul 30, 2020 16:47


Dr. Deborah Hartman leads the global research program for narcolepsy and other sleep-wake disorders at Takeda, a biopharmaceutical company. In this episode, Dr. Hartman talks about Takeda’s approach to studying sleep-wake disorders and the importance of working together with people with narcolepsy to better understand what is needed, and with the scientific and medical community to develop potential new therapies. Dr. Hartman and Claire discuss the lack of understanding around narcolepsy, including the difference between narcolepsy type 1 and type 2. Importantly, Dr. Hartman digs into the science behind sleep-wake disorders, including the cause of narcolepsy type 1 and how researchers have identified the neuropeptide, orexin as the master regulator of sleep and wakefulness. Additionally, Dr. Hartman walks through the process of discovering a new drug and conducting clinical trials, as well as how the ongoing COVID-19 pandemic has impacted research worldwide. You can learn more about ongoing clinical trials in narcolepsy here: https://www.wakeupnarcolepsy.org/research/clinical-trials/. Thank you to Dr. Hartman for joining us and to Takeda for their partnership and ongoing research into sleep-wake disorders like narcolepsy. You can follow Takeda at @TakedaPharma on Twitter. 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.

Narcolepsy 360
Narcolepsy 360: Lauren Thomas

Narcolepsy 360

Play Episode Listen Later Jul 16, 2020 42:04


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.

Narcolepsy 360
Narcolepsy 360: Dr. David Ingram

Narcolepsy 360

Play Episode Listen Later Jul 2, 2020 30:34


Dr. David Ingram is a pediatric sleep physician at Children’s Mercy Hospital. In addition to caring for children with sleep problems in clinic, he is the founding editor of the ATS Pediatric Sleep Case Series and is adjunct faculty in the department of psychology where he teaches a college Sleep & Dreams course. In this episode, Dr. David Ingram shares when he first learned about sleep medicine and why he chose to become a sleep medicine clinician. Dr. Ingram also shares how he approaches his pediatric treatment of children with narcolepsy. Claire and Dr. Ingram discuss transitional care for CWNs, assessing driving readiness in adolescents with narcolepsy and current research he is conducting in collaboration with Wake Up Narcolepsy. Dr. Ingram shares what surprised him about his findings in the recent research study. Its purpose is to better define the delivery of comprehensive care for children with narcolepsy, with a multidisciplinary approach to treatment. Dr. Ingram will be presenting “Care for the Child with Narcolepsy: A Survey of Families and Providers” at our upcoming WUN Narcolepsy Webinar on July 18, 2020. This WUN Education Day is free and can be attended from the comfort of your home! Click here to register for the webinar. We are grateful to Dr. Ingram’s dedication to pediatric sleep medicine and his work to help expand the field's understanding of effective treatment for CWNs and their families. 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.  

Narcolepsy 360
Doing Life During COVID-19: Homeschooling During a Pandemic with Lindsay Jesteadt

Narcolepsy 360

Play Episode Listen Later May 9, 2020 48:25


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.

Narcolepsy 360
Doing Life During COVID-19: Mental Health and Mindfulness with Dr. Jason Ong

Narcolepsy 360

Play Episode Listen Later Apr 23, 2020 27:40


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.

Narcolepsy 360
Narcolepy 360: Thaddeus Bath

Narcolepsy 360

Play Episode Listen Later Mar 26, 2020 29:54


Thaddeus Bath is a person with narcolepsy and is part of Wake Up Narcolepsy’s 2020 #TeamWUN for the Boston Marathon.  In this episode, Thaddeus shares how he was diagnosed with narcolepsy Type 2 in 2016. He discusses how sobriety helped realize that there was something bigger happening with his sleep issues. He also shares how fitness is an active passion of his. He is training for his black belt in Taekwondo, regularly goes to the gym to lift AND He runs...not just 5ks but half marathons, marathons and ULTRA marathons (100 miles long).  Thaddeus is currently part of the 2020 #TeamWUN for the Boston Marathon. Together they are training and working to raise $50,000 for narcolepsy research. Although a marathon is hardly a big feat for him anymore, it is an honor for him to participate in the Boston Marathon through spreading narcolepsy awareness and raising funds for narcolepsy research.  Since recording this interview, COVID-19 pandemic has affected all of our lives. The Boston Marathon is currently postponed until September 14th.. #TeamWUN is still proactively raising funds for narcolepsy research. You can support their fundraising effort here. You can follow Thaddeus at @thaddeus_bath on Instagram and @thaddeusbath on Facebook.  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.

Narcolepsy 360
Narcolepy 360: Kevin Cosgrove

Narcolepsy 360

Play Episode Listen Later Aug 29, 2019 44:20


Kevin Cosgrove is the Co-founder of Wake Up Narcolepsy, Biologic/Dermatology Sales Professional, and a PWN. In this episode, Kevin details his diagnosis process which led him to found Wake Up Narcolepsy with Monica and David Gow, with the intention to spread awareness about narcolepsy and fund narcolepsy research. He sheds light now the processes to diagnosis can be delayed due to individuals learning to adapt and mask their symptoms.  Claire and Kevin discuss how over the years, he has maintained a career as a sales professional by really understanding what is body needs in terms of medication, lifestyle habits, and a support system. He also shares how at certain points due to life and work, he’s had to prioritize which hobbies, golf and djing, he can spend time doing.  He wisely shares, “Don’t fight the disease, embrace it.” In this final episode of season one, both Kevin and Claire reflect on the growth of narcolepsy awareness, research breakthroughs, and medications in the past 10 years. They also share their hope and vision for the NEXT 10 years.  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.

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The Sleep Forum Podcast
Podcast: Wake Up Narcolepsy Claire Crisp about Education Day at Sleep Expo 2019

The Sleep Forum Podcast

Play Episode Listen Later Aug 26, 2019 5:40


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.

Narcolepsy 360
Narcolepsy 360: Tara Stuart

Narcolepsy 360

Play Episode Listen Later Feb 14, 2019 25:54


Tara Stuart is a mother, teacher, daughter of a person with narcolepsy and currently training for the Boston Marathon. In this episode, Tara shares her memories of growing up with her father having narcolepsy and how it affected their family. Tara’s dad wasn’t properly diagnosis well into his late 20s early 30s. He worked for his family’s construction company where he was able to accommodate his need to take naps. Tara’s dad is turning 90 this year and she decided to join Wake Up Narcolepsy’s 2019 Team for the Boston Marathon in honor of him. This opportunity has opened up her family to reflect and dialogue about their childhood. Her dad has even taken to writing down his memories. It is a sweet treat to hear their story through Tara. You can follow Tara and support her in her marathon training by donating here. 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 360
Narcolepsy 360: Kelsey Biddle

Narcolepsy 360

Play Episode Listen Later Jan 24, 2019 45:30


Kelsey Biddle is a PWN (person with narcolepsy) that was diagnosed, just over a year ago, with Type 1 Narcolepsy. In this episode, Kelsey shares the unique journey of being diagnosed within six weeks of the onset of symptoms. Kelsey has taken this past year to fully transition into her “new normal” by finding the right medications and creating a supportive schedule that allows her to do her job well as a clinical research coordinator in an Alzheimer’s research group in the Psychiatry & Neurology department at Brigham & Women’s hospital. Kelsey shares with Claire how she has allowed herself to grieve since coming to terms with her narcolepsy, but also she hasn’t given up hope in becoming a doctor. Kelsey offers great advice on self-care and how she schedules her days to promote wakefulness. Oh, and Kelsey is currently training for the Boston Marathon! Kelsey is part of Wake Up Narcolepsy’s 2019 Team for the Boston Marathon and is working to raise $50,000 for narcolepsy research. You can follow Kelsey at @biddlekd on Instagram and Facebook. You can also follow her @kbiddle616 on Twitter. If you are interested in Kelsey’s “coming out” story click here. You can also support her in her marathon training by donating here. 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.

The Sleep Forum Podcast
Podcast: Wake Up Narcolepsy Conference Coverage

The Sleep Forum Podcast

Play Episode Listen Later Jan 12, 2019 13:30


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.    

Narcolepsy 360
Narcolepsy 360: Dr. Kiran Maski

Narcolepsy 360

Play Episode Listen Later Dec 5, 2018 28:44


Dr. Kiran Maski is a Pediatric Neurologist that specializes in Sleep Medicine. She is the Director of the Neurology Sleep Clinic at Boston Children's Hospital @bostonchildrens. In this episode, Dr. Maski shares how she got into studying Sleep Medicine and how she leads the Sleep Clinic at Boston Children's  Hospital. She also details how she brings in a group of other specialists that address the comorbidity that tends to come into to play with a narcolepsy diagnosis.Dr. Maski is passionate about improving diagnostic delays and she has developed a screening tool to identify children and adolescents with narcolepsy and idiopathic hypersomnia in the community. With this tool,  she hopes to bring awareness about CNS hypersomnia conditions to children, parents, teachers, school nurses, and healthcare providers. She is partnering with Wake Up Narcolepsy and other sleep centers to validate this Hypersomnia Screening Tool validated. If you are interested in participating in the study please click here. We are grateful for Dr. Maski who works to raise awareness of narcolepsy and prompt referrals to appropriate pediatric specialists for faster diagnoses.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.Disclaimer: Since recording this episode, Sodium oxybate has been approved by the FDA for pediatric use. Narcolepsy 360 is a production of Wake Up Narcolepsy, in partnership with Jazz Pharmaceutical.

Narcolepsy 360
Narcolepsy 360: Henry Nicholls

Narcolepsy 360

Play Episode Listen Later Nov 21, 2018 39:34


Henry Nicholls is a person with narcolepsy, an author and science journalist specializing in evolutionary biology, conservation, the history of biology and sleep. His most recent publication is SLEEPYHEAD: The Neuroscience of a Good Night's Rest. In this episode, Henry shares about his own experience in getting his narcolepsy diagnosed and how he has been able to build a career through writing and journalism. He also details how in writing a book about sleep disorders, he was able to identify that he deals with multiple sleep disorders beyond narcolepsy, and also how this is common for people living with narcolepsy. He traveled all over the world interviewing sleep experts, clinicians, and researchers about sleep disorders-- in many ways, it was clarifying and illuminating to see the science behind disorders that affect him. So much so that he has been able to achieve better sleeping habits and get actually restful sleep! You can follow Henry @WayOfThePanda on Twitter and @SleepyheadByHenryNicholls on Facebook. If you are interested in learning more about his journalism and books, please go to http://henrynicholls.com. 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.

Narcolepsy 360
Narcolepsy 360: Monica and David Gow

Narcolepsy 360

Play Episode Listen Later Nov 14, 2018 40:29


Monica and David Gow are co-founders and board members of Wake Up Narcolepsy. They are parents of a young adult with narcolepsy. In this episode, Monica and David share their journey on getting their son properly diagnosed with narcolepsy. The struggle and gross negligence of doctors, who didn’t take their sons symptoms seriously, led them to start Wake Up Narcolepsy, a non-profit organization to raise research funds for a cure and raise awareness about narcolepsy. This month they are celebrating the 10 year anniversary of Wake Up Narcolepsy. Monica and David also tell us about how it all started and what they hope Wake Up Narcolepsy offers in the next 10+ years. You can follow Monica @wognom on Twitter. 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.

Narcolepsy 360
Narcolepsy 360: Claire Crisp

Narcolepsy 360

Play Episode Listen Later Nov 8, 2018 34:59


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.

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January Jones sharing Success Stories
January Jones welcomes One Door Closes with Ken McDonnell

January Jones sharing Success Stories

Play Episode Listen Later Feb 17, 2014 51:00


One Door Closes January Jones welcomes Tom Ingrassia and Jared Chrudimsky co-author's of When One Door Closes: Overcoming Adversity By Following Your Dreams sharing true life stories of people who have overcome insurmountable obstacles in order to live their dreams. Today's interview features Ken McDonnell who is a husband, a father, triathlete and public relations director for Wake Up Narcolepsy, a nonprofit supporting awareness for Narcolepsy awareness and research.    In October 2007, just two weeks after completing a triathlon, Ken was riding his mountain bike when a car struck him from behind. He has no recollection of the accident, or the next five weeks. He was air-lifted to UMass Medical Center where a team of trauma specialists saved his life, and where his saga began, through life support, risky surgery, lengthy rehad and finally back from the abyss.  

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January Jones Sharing Success Stories
January Jones-Mind Over Body-McDonnell

January Jones Sharing Success Stories

Play Episode Listen Later Feb 13, 2014 51:12


January Jones welcomes Tom Ingrassia and Jared Chrudimsky co-author’s of When One Door Closes: Overcoming Adversity By Following Your Dreams sharing true life stories of people who have overcome insurmountable obstacles in order to live their dreams. Today’s interview features Ken McDonnell who is a husband, a father, triathlete and public relations director for Wake Up Narcolepsy, a nonprofit supporting awareness for Narcolepsy awareness and research. In October 2007, just two weeks after completing a triathlon, Ken was riding his mountain bike when a car struck him from behind. He has no recollection of the accident, or the next five weeks. He was air-lifted to UMass Medical Center where a team of trauma specialists saved his life, and where his saga began, through life support, risky surgery, lengthy rehad and finally back from the abyss.Ken McDonnellFinding a therapist that has the expertise to assist you is relatively easy. Finding a therapist that has the expertise to assist, understands what you need and is a good fit for you, is something completely different.One of the main reasons I choose to work with clients suffering from anxiety is because I have suffered from anxiety myself.I struggled with social, generalized anxiety and panic attacks for many years. I know what it is like to avoid social situations because of the fear of feeling judged; I understand the humiliation of suddenly having a panic attack in public for no apparent reason; and I know what it is like to always be afraid of people seeing your anxiety and thinking that there is something wrong with you, or worse.I understand and I get it.Because I understand what it is like to have lived (past tense), with anxieties, and because I have tried a huge number of different tools and techniques myself and discovered what works and what does not – I can now offer people real help with real results for a better quality of life.I also understand that there is no one way to fix each person’s anxieties. We are all unique. Each person brings specific and individual needs to a treatment session; and each person needs to be understood and treated in light of his or her own bio/psycho/social world.This show is broadcast live on W4CY Radio (www.w4cy.com) part of Talk 4 Radio (http://www.talk4radio.com/) on the Talk 4 Media Network (http://www.talk4media.com/).