Julie Flygare

Will NBC’s Stumble TV show stumble narcolepsy?

julie — Tue, 28 Oct 2025 20:20:29 +0000

Yes, Project Sleep is aware of the upcoming portrayal of narcolepsy on NBC’s upcoming show “Stumble” premiering on November 7, 2025. In the trailer, a cheerleader named Madonna falls dramatically over backwards with a thud, then later says “I have narcolepsy.” Through Project Sleep’s Hollywood Initiative, we are working to get in touch with the network but haven’t spoken to anyone yet.

Watch full trailer here:

Celebrating TV Stories that Make a Difference

The contrast is stark given than last night, Project Sleep celebrated “stories that matter” alongside an incredible group of Hollywood writers, producers, and actors at the Norman Lear Awards hosted by Hollywood, Health & Society.

“Accuracy matters. Stories matter.” – Marty Kaplan, founding director of the USC Annenberg Norman Lear Center

It was invigorating to share the room with people (including other NBC show representatives) who understand that Hollywood’s portrayals of serious medical conditions matter, both in helping under-served populations get accurate diagnoses sooner and in helping people feel seen and validated by characters on TV.

Yet Narcolepsy Storylines Still Stumbling

This morning, I returned to work only to find more messages from community members asking about NBC’s Stumble show’s portrayal of narcolepsy. One professional in our space wrote to me, “If smart, they have involved you already!” Thank you for reaching out, I wish I had a better response by now, but all I can say is that I hear you and your concerns.

Through our Hollywood Initiative, Project Sleep has made multiple attempts to connect with the network and so far have been unable to speak with anyone about the portrayal or our offers to help support them. Project Sleep currently has a Hollywood Initiative to foster accurate and engaging storylines about sleep disorders like sleep apnea and narcolepsy.

Even though the show is now in late stages, there are still many opportunities to foster awareness and work together. In 2025, it’s time to abandon the Deuce Bigalow Male Giglio version of narcolepsy (dramatically pratfalling in a way that would leave a real person with a concussion) and it’s time to work with the narcolepsy community to showcase accurate symptoms of this fascinating yet serious neurological condition.

Watch the trailer on Instagram
Learn more about Project Sleep’s Hollywood Initiative

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Orexin Agonists for Narcolepsy: 2025 Updates from Takeda, Alkermes, and Eisai at World Sleep

julie — Sun, 26 Oct 2025 22:12:05 +0000

If you’ve been following the development of orexin agonists for narcolepsy, 2025 has been an exciting year. Most recently at the World Sleep Congress in Singapore, I had a front row seat on history as researchers shared the latest clinical trial results from Takeda, Alkermes, and Eisai. These orexin-targeted therapies are showing great promise for reducing daytime sleepiness and cataplexy in people with type 1 narcolepsy with cataplexy, and is one of the most exciting developments in neurology and sleep medicine right now.

The History of Orexin

Since 1999, we’ve known that type 1 narcolepsy with cataplexy (the condition I live with and wrote a memoir about) is caused by a loss of neurons producing the neuropeptide orexin (or hypocretin), which plays a central role in maintaining wakefulness. However, finding treatments able to cross the blood-brain barrier and mimic the function of orexin has been scientifically challenging.

Twenty years after the discovery of orexin, at World Sleep 2019 in Vancouver, Canada, Takeda presented their first-in-human clinical trial findings (in people with narcolepsy, healthy adults, and elderly people) for the orexin 2 receptor selective agonist, TAK-925. Sitting in that room in Vancouver on that day, the excitement was undeniable. I felt honored to be there as these early outcomes were shared publicly for the first time. Read my post about this experience, Orexin/Hypocretin Agonists are Coming! Part I: Reporting Back from World Sleep 2019.

Since 2019, Takeda has made great progress and other companies have joined the space to develop orexin agonists. At World Sleep 2023 in Rio de Janeiro, Brazil, Alkermes presented early outcomes from their first-in-human study of ALKS-2680 in people with type 1 narcolepsy and healthy adults. Takeda also presented on TAK-861 in a small study of healthy adults. Also in 2023, I participated in an orexin agonist trial (see glamorous “Clinical Trial Barbie” photo above), it wasn’t easy, but it was important to me that I personally take part in this historic development.

Front Row Seat at World Sleep 2025

The pharmaceutical interest in this space has continued to grow, with Takeda’s and Alkermes’ trials advancing, and Centessa sharing early phase 1 results in healthy adults for their novel orexin agonist (ORX-750) at APSS SLEEP 2025 in Seattle. (Centessa expects to have data from their phase 2a study of ORX-750 for treatment of narcolepsy type 1 (NT1), narcolepsy type 2 (NT2) and idiopathic hypersomnia (IH) by the end of 2025.)

At World Sleep 2025 in Singapore, I knew to arrive early to the narcolepsy drug development to get a seat. Given that I may be one of the only people living with narcolepsy at this session, I didn’t feel shy about sitting in the front row. By the time the session began, the (really small) room was overflowing with people standing along the walls and sitting on the floor, and more people trying to sneak a peek from outside the doorways. Everyone had their phones out to take pictures of every single slide, in unison. It was comical but also a reminder how important this moment was.

Note to conference organizers: please put historic sessions in big conference rooms.

Takeda’s Oveporexton (TAK-861): Phase 3 Outcomes

Following strong phase 2b results for Takeda’s TAK-861, an oral, selective orexin receptor 2 agonist (OX2R agonist) now called “oveporexton” (still working on saying that word), Takeda announced positive Phase 3 data from two international trials in people with type 1 narcolepsy at World Sleep 2025 — the first large-scale, late-stage studies of an orexin-directed therapy.

Lead investigators and research superstars (Drs. Emmanuel Mignot, Yves Dauvilliers, and Lucie Barateau) reported the results from two phase 3 clinical trials. Participants (in both trials around the world) receiving oveporexton showed:

Significant improvements in daytime wakefulness as measured by the Maintenance of Wakefulness Test (MWT) and Epworth Sleepiness Scale (ESS).
Reduced frequency of cataplexy, with many people experiencing few or no episodes of cataplexy by the end of the study.
Favorable tolerability and gains in functional outcomes (like mood, cognitive clarity, and quality of life).

From here, we expect Takeda will file a new drug application (NDA) for oveporexton in people with NT1 with the FDA in the next 6 months. Importantly, Takeda is also advancing phase 2 trials of oveporexton in people with narcolepsy type 2 (NT2, or narcolepsy without cataplexy) and idiopathic hypersomnia (IH).

Alkermes’ Alixorexton (ALKS-2680): Phase 2 Results

During the same session, lead researchers (Drs. Giuseppe Plazzi and Yves Dauvilliers) presented phase 2 data from Alkermes’ Vibrance-1 trial of ALKS-2680, now called “alixorexton” (working on saying this word too), an oral selective orexin-2 receptor agonist for people with type 1 narcolepsy.

The clinical trial participants receiving alixorexton showed:

Dose-dependent improvements in daytime wakefulness on the Maintenance of Wakefulness Test (MWT) and reduced sleepiness on the Epworth Sleepiness Scale (ESS) compared to placebo.
The data also showed fewer cataplexy episodes, improvements in cognitive clarity and fatigue, with favorable safety and tolerability across all dose groups.

Alkermes’ findings further strengthen the evidence and promise of orexin-targeted treatments for people with type 1 narcolepsy with cataplexy, with phase 3 trials planned to begin by the first quarter of 2026. Alkermes is also currently advancing phase 2 clinical trials for people living with type 2 narcolepsy (without cataplexy) and idiopathic hypersomnia (IH).

Eisai’s E2086: First NT1 Results

On the same day at World Sleep 2025 in Singapore, Eisai presented the first clinical study of E2086, a selective orexin-2 receptor agonist, in people with NT1. The study aimed to evaluate the efficacy, safety, and tolerability of three dose strengths of E2086 compared to placebo and modafinil in people with NT1. This was a small study, with 19 participants completing the study, and the results are promising, indicating that:

All three doses improved EDS compared to placebo and modafinil on the objective Maintenance of Wakefulness Test (MWT). In my opinion, this data was particularly striking, with the two higher doses showing average sustained wakefulness for over 30 minutes on the MWTs.
All doses reduced sleepiness as measured by subjective measurers (using the Karolinska Sleepiness Scale, KSS).
E2086 was generally well tolerated.

With these promising results, E2086 will move into phase 2 clinical trials in people with NT1 (narcolepsy type 1, with cataplexy) and NT2 (narcolepsy type 2, without cataplexy).

The Future is Bright

It’s hard to believe that orexin agonists are getting closer to FDA approval, especially for people with type 1 narcolepsy. I find myself daydreaming about the years ahead, wondering if this time next year, I may be taking an FDA-approved orexin agonist as part of my treatment regimen. I’m cautiously optimistic that this will be an exciting turning point for many people with narcolepsy to improve their symptoms and quality of life.

Personally, I wonder if I’ll have less cataplexy while playing tennis (the moment right before I’m about to hit a great shot is a huge trigger currently, especially when I play tennis in the evening or without a nap). I wonder if I’ll regain minutes or hours of wakefulness, I wonder what I might accomplish with any extra time reclaimed. But I also want to be cautious, as I don’t believe this will be a cure, but a positive step toward a brighter future.

Our International Community

As we get closer to orexin agonists becoming a reality, I wonder about the international access to the orexin agonists, as my friends and co-advocates around the world are so close to my heart. We do not have to share a language to feel a deep sense of camaraderie with each other, as narcolepsy knows no boundaries and doesn’t discriminate on how it can uproot a person’s life, regardless if they live in Los Angeles, Singapore, Kenya, Brazil, Italy, Iran, or Israel. International drug access is a complicated topic, but I am hoping that as many people with narcolepsy around the world may benefit from this historic development in the near future.

NT1 v. NT2 v. IH Diagnoses

One additional curiosity is that I believe this will be the first treatment approved specifically for narcolepsy type 1 before it’s approved for narcolepsy type 2. Previous treatments received approval for the indications like “excessive daytime sleepiness (EDS) of narcolepsy” or “cataplexy in people with narcolepsy.” As long as the treatment was approved for EDS of narcolepsy, people diagnosed with type 1 or type 2 could access as on-label treatment. This will be the first time that the narcolepsy community will be a bit more divided in this way, with trials for type 2 narcolepsy coming along, but a bit behind those for type 1. In part, I find this interesting because I do fear that some people get confused about whether they are diagnosed with type 1 or 2. I’ve heard people say, “I have type 1 narcolepsy without cataplexy.” There are also people who believe they are diagnosed with both NT2 and IH.

While Project Sleep aims to educate the patient community via the Types of Narcolepsy toolkit and What is Idiopathic Hypersomnia resources, this confusion is still understandable. As the field works to evolve our understanding of the “borderlands of narcolepsy,” and develop better diagnostic tools for those living with central disorders of hypersomnolence, I do think it will be strange at first for NT1 and NT2 to be divided in access to an orexin agonist at least initially. Importantly, clinical trials are advancing for both NT2 and IH as well. To learn more and get involved in clinical trials, visit Project Sleep’s Participate in Research page.

Huge Thanks to Participants & Researchers!

Thank you to each and every person who has participated in a research study. I know it’s not easy and can take a lot of personal sacrifice to participate in clinical trials. Your contributions have helped orexin agonists advance as quickly as possible. Thank you also to the researchers and drug developers who are working tirelessly. When I was on a clinical trial in 2023, the team at the trial site was so supportive and patient, we navigated some vulnerable moments together and for those intense few months, they felt like family. I know these are just a few of the countless dedicated individuals who are working behind the scenes daily to advance these novel therapies. Your work matters. You give us so much hope!

What are your thoughts or questions about the orexin agonists in development? Let me know in the comments!

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School Accommodations for Narcolepsy

julie — Sun, 12 Oct 2025 01:20:57 +0000

Navigating School with Narcolepsy: Key Takeaways from Project Sleep’s Toolkit

Living with narcolepsy in an educational setting can mean juggling daytime sleepiness, brain fog, medication, side effects, and in some cases, cataplexy. This post highlights lessons from Project Sleep’s Navigating School with Narcolepsy toolkit and connects you to other advocacy resources.

Understanding the Toolkit

The toolkit from Project Sleep was created to help students, families, clinicians, and educators navigate academic life with narcolepsy. It covers the legal framework (ADA and Section 504), how to document your diagnosis, sample accommodations, and advice for building an effective support team.

Know Your Rights: ADA & Section 504

Narcolepsy can qualify as a disability under U.S. law if it substantially limits one or more major life activities, including sleeping. This protection allows students to request “reasonable accommodations” so they can access learning on equal terms. For families of high school students, this post on 504 Plan Tips for Parents explains how to initiate and negotiate a plan effectively.

Build an Advocacy Team Early

Form your team early: the student, parent or guardian, treating sleep specialist, and key school staff. Documentation should not only confirm the diagnosis but describe functional impacts and suggest accommodations. Also, I share practical language examples in Five Key Phrases for Health Advocates, which can also help in school settings.

Accommodations That Make a Difference

Project Sleep’s Navigating School with Narcolepsy Toolkit includes one of the most comprehensive lists of classroom, testing, and scheduling accommodations for students living with narcolepsy. The best accommodations are individualized—what helps one student may differ for another—but these are among the most commonly effective examples drawn directly from the toolkit:

In-Class & Daily Learning

Seating near the front of the room or by a window for better alertness.
Freedom to stand, stretch, or take quiet movement breaks without drawing attention.
Permission to use fidget items, chew gum, or sip water to maintain alertness.
Copies of lecture notes, outlines, or slide decks to reduce pressure to take notes while fatigued.
Audio or video recording of lectures (with teacher consent) to replay material later when alert.
Access to natural lighting when possible; avoidance of dark or overly warm environments that promote drowsiness.
Alternate participation methods—typed or recorded answers instead of verbal responses on low-alert days.

Testing, Quizzes, and Assignments

Extended test time to account for attention lapses or brief naps.
Breaks during long exams to rest, stretch, or nap briefly if needed.
Testing at the time of day when the student is typically most alert.
Quiet, low-distraction testing environments or private testing rooms.
Alternate test formats (written, oral, project-based) if fatigue or cataplexy interfere with standard formats.
Flexible deadlines or make-up opportunities when symptoms interfere with completing work on time.
Access to technology aids such as speech-to-text software or keyboard use for essays.

Scheduling, Attendance & Workload

Priority registration to select classes at the most alert times of day.
Permission to schedule a nap period (20–30 minutes) during the school day in a safe, quiet location.
Reduced course load when medically necessary or during flare-ups.
Flexibility in attendance policies to allow recovery from severe sleepiness or cataplexy episodes.
Option to take online, hybrid, or asynchronous courses when in-person scheduling isn’t sustainable.
Coordinating longer breaks between classes to accommodate medications and naps.

Communication & Safety Plans

Informing key staff (teachers, nurse, counselor) about narcolepsy and cataplexy so they recognize what’s happening if an episode occurs.
Identifying a safe space for the student to rest or recover during severe symptoms.
Establishing discreet signals or plans to excuse the student temporarily without embarrassment.
Providing written summaries after meetings or instructions to compensate for information missed due to drowsiness.
Encouraging peer or buddy note-sharing when possible.

For even more detailed examples—including sample letters for physicians and school administrators—see Project Sleep’s full Navigating School with Narcolepsy toolkit (pages 7–11).

Transitions: High School to College and Beyond

As the toolkit explains, the structure of support changes at each educational level. In college, accommodations are managed through disability services offices rather than individual teachers. Start early, bring updated documentation, and be ready to self-advocate.

In addition to writing a narcolepsy memoir about my experience adapting to this serious neurological condition while in law school, the video below describes the accommodations that helped me get through law school as a student living with type 1 narcolepsy with cataplexy:

Self-Advocacy

Advocacy is a skill that grows over time. Explain narcolepsy in everyday language, note what works, and adapt your plan each school year. I love the quote from Kenya, a Project Sleep Jack and Julie Narcolepsy Scholarship recipient, “It’s okay to be delayed, just not denied.”

“I can do anything, but I can’t do everything.”

This is another one of my favorite mantras. It’s likely true for everyone, but especially for students with narcolepsy or idiopathic hypersomnia (IH). In this video above, I share how I prioritize what’s most important to me to succeed as a person living with type 1 narcolepsy with cataplexy.

Get the Full Toolkit

For sample language, doctor templates, and detailed explanations of educational rights, visit Project Sleep – Navigating School with Narcolepsy Toolkit Page

Further Resources

Attribution

This article draws upon Project Sleep’s Navigating School with Narcolepsy toolkit. Please visit Project Sleep for the full guide, templates, video and podcast resources.

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Sleep Disorder Awareness on ABC News Live on World Sleep Day 2023

julie — Wed, 22 Mar 2023 18:05:21 +0000

On World Sleep Day Friday March 17 2023, I was honored to be a guest on ABC News Live to talk about sneaky signs of sleep disorders. Please watch and share this video.

Watch Video

The segment featured ABC News Anchor and Correspondent, Diane Macedo, author of The Sleep Fix, in a group chat with Dr. Michael Grandner, Behavioral Sleep Medicine Specialist and Director of the Sleep & Health Research Program at the University of Arizona, myself (Julie Flygare, JD, President & CEO of Project Sleep and author of Wide Awake and Dreaming: A Memoir of Narcolepsy) and Mike Muse, ABC News Contributor and SiriusXM Radio Host of the “The Mike Muse Show.”

Sleepiness can be sneaky

I’m so grateful for the opportunity to talk about my journey toward receiving my narcolepsy diagnosis. how it was hard for me to detect my sleepiness, as I was not falling asleep in class, but rather not fully “there.” I thought maybe I wasn’t cut out for law school, the course work was just too dense or challenging for my brain. Turns out, I was living with type 1 narcolepsy with cataplexy, a serious chronic disorder of the sleep/wake cycle and didn’t know it!

Mental health and sleep health

It was wonderful to also highlight the important connection between mental health and sleep health in this segment. I’d felt so out of control when I didn’t know what was wrong. Finding my narcolepsy diagnosis put me on a path toward finding treatment, community support and self-acceptance.

Could I have a sleep disorder?

If you or a loved one is having trouble maintaining clear and present wakefulness during the day on a regular basis, it is important to consult an AASM Board Certified Sleep Specialist because most primary care health care providers may not be familiar with sleep disorders. Learn more on Project Sleep’s website: www.project-sleep.com.

Huge thanks to ABC News Live and Diane for this opportunity to share my story and raise critical awareness about under-recognized and often misunderstood sleep disorders. Thank you for sharing this video!

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Narcolepsy in The Mysterious Benedict Society New Disney+ Series

julie — Sat, 03 Jul 2021 12:26:48 +0000

A review of Ep. 1-2 written by a person living with type 1 narcolepsy with cataplexy. Please note: may contain spoilers.

Anyone else excited to watch Episode 3 of “The Mysterious Benedict Society” this weekend? Here’s my review of Episodes 1-2’s portrayal of narcolepsy!

On June 25th, the first two episodes of “The Mysterious Benedict Society” premiered on Disney+ as a mystery adventure series based on the best-selling young adult book series by Trenton Lee Stewart. The books and TV series feature four gifted orphans who are recruited by an eccentric man living with type 1 narcolepsy with cataplexy, Mr. Benedict (played by Tony Hale), for a dangerous mission to save the world from a global crisis. In the books, and presumably in the TV series, Mr. Benedict’s identical twin, Mr. Curtain (also played by Hale) has narcolepsy too.

Watching the series is important to me because, for many people, Hollywood’s depictions of narcolepsy may be their only exposure to narcolepsy’s symptoms and impacts on daily life. Thus, narcolepsy advocates and patient-driven organizations like Project Sleep must be aware of cinematic portrayals and join the conversation as much as possible. In addition, a family show on Disney+ will influence a younger generation’s perceptions, which is particularly impactful as narcolepsy often develops in children and young adults who are around the same age as this show’s target audience.

Key takeaways from my review (for the full review, scroll down)

What do I think overall? My feelings about the narcolepsy portrayal in this series are mixed. There are accurate and inaccurate aspects to the portrayal in episodes 1-2, but I do believe this depiction is unlike other Hollywood depictions because Mr. Benedict is a complex, wise and empathetic leader who viewers relate to and are cheering for.
Are the symptoms of narcolepsy portrayed accurately? In The Mysterious Benedict Society, two major symptoms of narcolepsy: excessive daytime sleepiness and cataplexy (muscle weakness/paralysis triggered by emotions) are inaccurately combined into one symptom. In reality, the two symptoms are different, the main and critical difference being that a person remains conscious during an episode of cataplexy, unlike falling asleep. While inaccurate, the Disney+ series did stick closely to the original book’s (also inaccurate) description of strong emotions causing Mr. Benedict to have “sudden and uncontrollable attacks of deep sleep.”

Will the TV series help to raise awareness? Viewers will likely be more aware of the word “narcolepsy” after watching The Mysterious Benedict Society and may realize it is a real medical condition. In the very big picture, if people currently think that narcolepsy = falling asleep while standing or in the middle of a conversation, viewers of The Mysterious Benedict Society series will think narcolepsy = strong emotions lead to falling asleep. Is this an advancement? I’m not sure, time will tell.
Will the TV series help to reduce stigma? Unlike many other Hollywood portrayals of narcolepsy, I believe The Mysterious Benedict Society’s portrayal may reduce stigma for those living with narcolepsy. Audience members see that narcolepsy is an aspect of Mr. Benedict’s life, certainly a serious challenge, but it is not the only thing we know about him. He is characterized as a quirky leader, well-regarded by his assistants, and displays kindness, wisdom, and empathy. Plus, he’s trying to save the world from a global crisis! By having complexity and motivations unrelated to his narcolepsy, viewers who do not have narcolepsy will still relate to Mr. Benedict’s character, cheer for him, and even look up to him. Even if subconscious, I believe viewers may walk away with an understanding that narcolepsy could happen to someone like them—someone who shares their values and motivations, even someone they look up to as a leader.

Full review of Episodes 1-2

Sitting down to watch The Mysterious Benedict Society Ep. 1-2, my burning questions were:

1.) How will the series depict and describe narcolepsy with cataplexy?
2.) Are the symptoms of narcolepsy portrayed accurately?
3.) Will the TV series help to raise awareness and/or reduce stigma?
4.) How will the TV series portrayal compare to the books?
5.) Were patient organizations or people with narcolepsy consulted?

1.) How will the series depict and describe narcolepsy with cataplexy?

We meet Mr. Benedict late in episode 1 and his “narcolepsy” comes into play quickly (timestamp 40:00). While laughing, Mr Benedict’s eyes close and he slumps backward in his chair. His three assistants spring into action to put a comfortable pillow behind his head, just as he sits up, opens his eyes and asks, “How long was I out for?” His assistant, Number Two replies “Mere seconds, sir.”

Mr. Benedict explains to the orphans, “Well, here’s a helpful fact. I have type 1 narcolepsy with cataplexy. Quite severely, I might add. It’s brought on by extremes… you know, extreme emotions, mainly from a root of joy. Um, sometimes the absurdity of the universe, a good pun. Constance, apparently.”

He begins laughing again, and Number Two hands Mr. Benedict a small piece of fabric. Mr. Benedict says, “This plaid is no accident. This particular pattern, it calms me.” One of the orphans, Constance Contraire responds, “Am I the only one who’s going to acknowledge that this is weird?”

Mr Benedict replies, “No, it is. It is.”

At the end of episode 1, with alarms blaring in a stressful scene, Mr. Benedict says to the orphans, “Your responsibilities, uh, seem to have begun quicker than we thought… Uh oh.” He is standing, as his eyes close and his body falls sideways out of the camera frame. The episode ends.

Episode 2 opens with the alarms still blaring, and Mr. Benedict slumped over asleep on the floor. He awakes quickly and asks his assistant, Rhonda, “How long was I out?”

Later, 31 minutes into episode 2, there’s a heart-felt moment with Mr. Benedict standing and telling the orphans, “I’m so proud of you.” His eyes flutter and he starts to lean backward for a second before catching himself.

Around 36 minutes into episode 2, Mr. Benedict is sitting on a log in the woods, talking to Rhonda about the orphans. With great excitement and emotion, he says, “The bravery of these children, I have never seen anything like it… It’s such, such bravery.”

With that, his eyes roll back, eyelids close, and he slumps sideways onto the forest floor. Rhonda and Number Two move him away from a nearby fire flame. Rhonda calls out “Mr. Benedict!” and Number Two snaps her finger over his face, as if to try to wake him up.

2.) Are the symptoms of narcolepsy portrayed accurately?

In The Mysterious Benedict Society, two major symptoms of narcolepsy: excessive daytime sleepiness and cataplexy (muscle weakness/paralysis triggered by emotions) are inaccurately combined into one symptom. In reality, the two symptoms are different, the main and critical difference being that a person remains conscious during an episode of cataplexy, unlike falling asleep.

The emotional triggers described by Mr. Benedict (“extreme emotions, mainly from a root of joy. Um, sometimes the absurdity of the universe, a good pun”) are fairly accurate, but they trigger cataplexy, not sleep. Cataplexy is a major but little-known symptom of narcolepsy causing one’s muscles to become weak/paralyzed. The severity can range from a buckling of the knees or slackening of the jaw to fully collapsing to the ground. Importantly, even if a person falls to the ground during an episode of cataplexy, they are awake and aware of their surroundings, hearing people around them and feeling their body’s position, but unable to move for a few seconds up to a few minutes. Remaining conscious during cataplexy is an important aspect that helps doctors distinguish this from other medical issues like fainting or seizures, where there’s generally a loss of consciousness.

Excessive daytime sleepiness is another major symptom of narcolepsy. Generally, a powerful sleepiness may come over a person during the day and, depending on the severity and circumstances, may cause an individual to fall asleep. However, this is often much more subtle and invisible than Hollywood’s comedic portrayals of falling over asleep.

Personally, Hale’s narcolepsy “episodes” do not resonate with my experience because of the confused combination of two symptoms. To see real-life cataplexy, here’s a short YouTube playlist. By giving the impression that Mr. Benedict is falling asleep, it makes his “episodes” more light-hearted than the real-life experience. For me, remaining conscious in a paralyzed body is terrifying.

Avoiding cataplexy: Mr. Benedict’s assistants hand him a scrap of plaid fabric in an effort to calm him down. In the book, he wears plaid suits for this reason. There is a lot of truth to the idea of trying to self-regulate emotions to avoid cataplexy, however I’ve never used a piece of fabric, but I suppose it is plausible. Beyond self-regulation strategies, it is important for viewers to know that treatment options are available and can reduce symptoms. Treatment varies widely by person and can take a while to find an optimal combination.

3.) Will the TV series help to raise awareness and/or reduce stigma?

Raising awareness: Viewers will likely be more aware of the word “narcolepsy” after watching The Mysterious Benedict Society and may realize it is a real medical condition. However given the strange combining of two symptoms into one symptom, I’m not sure that I would’ve recognized my own experience in Mr. Benedict’s portrayal when I didn’t know what was wrong with me. My sleepiness felt very separate from my “knee thing with laughter” and I never associated the two with each other. But perhaps there is enough info here to inspire someone to google narcolepsy to learn more.

In the very big picture, if people currently think that narcolepsy = falling asleep while standing or in the middle of a conversation, viewers of The Mysterious Benedict Society series will think narcolepsy = strong emotions lead to falling asleep. Is this an advancement? I’m not sure, time will tell.

I wish I’d seen resources mentioned in closing credits or on Disney+’s website. It is important for viewers to know: If you or a loved one are experiencing symptoms like Mr. Benedict’s, please consult a board certified sleep specialist.

Reducing stigma: Unlike many other Hollywood portrayals of narcolepsy, The Mysterious Benedict Society TV series may actually reduce stigma for those living with narcolepsy. Audience members see that narcolepsy is an aspect of Mr. Benedict’s life, certainly a serious challenge, but it is not the only thing we know about him. He is characterized as a quirky leader, well-regarded by his assistants, and displays kindness, wisdom, and empathy. Plus, he’s trying to save the world from a global crisis! By having complexity and motivations unrelated to his narcolepsy, viewers who do not have narcolepsy will still relate to Mr. Benedict’s character, cheer for him, and even look up to him. Even if subconscious, I believe viewers may walk away with an understanding that narcolepsy could happen to someone like them—someone who shares their values and motivations, even someone they look up to as a leader.

Why does it matter that we know more about Mr. Benedict beyond his narcolepsy? Stigma is a concept of othering people; that individuals with a certain identity or characteristic (like narcolepsy) separates or lowers their social status. When people realize that they still share similar experiences, values, or motivations with individuals with a characteristic like narcolepsy, there is common ground and shared understanding, which can lead to greater empathy, realizing that the characteristic they do not share (like narcolepsy) could still be something that could happen to someone like them or someone they care about, instead of separating and othering them.

4.) How will the TV series portrayal compare to the books?

Full disclosure, I’ve read parts of the first book but not the full series. I’ve learned most about the series from my friend, Cassandra, a big Benedict fan, a Jack & Julie Narcolepsy Scholarship recipient, and Rising Voices of Narcolepsy speaker! And here’s a helpful Fandom page.

So far, the portrayal of narcolepsy in the TV series sticks close to the original book’s inaccurate description of strong emotions causing Mr. Benedict to have “sudden and uncontrollable attacks of deep sleep.” However, there are a few differences so far:

In the TV series, Mr. Benedict clearly states that he has a severe case of “type 1 narcolepsy with cataplexy,” which is accurate terminology that surprised me. However, the first book, published in 2008, only used the term “narcolepsy” and never mentions “type 1” or “cataplexy” at all. In 2008, saying “type 1” or “type 2” was not typical as that’s been a more recent development in terminology, so it’s not too surprising that the 2021 Disney+ series updated his condition name to “type 1 narcolepsy with cataplexy.”
Interestingly, Mr. Benedict mentions “the root of joy” as a strong emotional trigger. Joy is not mentioned in the original book. The book mentioned “emotions and laughter” which sticks more closely to real-life triggers of cataplexy. The common emotional triggers are laughing excitedly, making a sharp minded remark, telling a joke, and before reaching the punchline of a joke. Mr. Benedict’s mention of joy is consistent with another recent cinematic depiction of narcolepsy. In Ode to Joy (2019), main character Charlie’s main emotional trigger for cataplexy was “joy.” Is it a coincidence or is Hollywood building off of another Hollywood depiction?
Interestingly, Cassandra pointed out to me that in the prequel book, The Extraordinary Education of Nicholas Benedict, published in 2012, cataplexy is mentioned by name in a fascinating passage that seems to acknowledge the original error in combining the two symptoms by explaining that a younger Nicholas Benedict “discovered that what sometimes happened to him when he experienced strong emotions was known as cataplexy, and that his particular version of it was rare. When others suffered attacks of cataplexy, they were temporarily paralyzed but remained awake. Nicholas always lost consciousness. So I’m not just different from everyone I know, he mused. I’m even different from other people with narcolepsy.”
We just met Mr. Curtain briefly at the end of Ep. 2, but Cassandra pointed out that Mr. Curtain wasn’t using a wheelchair. In the book, Mr. Curtain uses a wheelchair due to the severity of his narcolepsy/cataplexy symptoms.

5.) Were patient organizations or people with narcolepsy consulted?

I would love to know how Tony Hale prepared for this role – what examples he studied and what instructions or coaching he received. Project Sleep was not involved in the development or filming and from watching Ep. 1-2, I do not believe other patient organizations or individuals with narcolepsy were consulted. Not sure, but that’s my hunch.

In 2021, when social media easily connects people around the world and across industries and professions, I believe it should be standard practice for Hollywood writers developing portrayals of real-life serious chronic conditions to consult patient organizations and individuals living with the condition. Writers may fear that these consultations might hamper their creative process but I believe they will be fruitful and enrich the writers’ plot possibilities.

Another big mystery remains how the original author, Trenton Lee Stewart, got the idea to include narcolepsy in the story’s plot. Did he know someone personally with narcolepsy or did he find narcolepsy through research? The book’s portrayal is inconsistent so I am not sure.

Tell me what you think!

For upcoming episodes, I’m curious to see how Mr. Curtain’s narcolepsy is portrayed and if other symptoms (like hypnagogic hallucinations and sleep paralysis) will come into play. And I am looking forward to hearing your thoughts, please leave a comment below!

For a younger generation, The Mysterious Benedict Society may be one of the defining portrayals influencing public perceptions of narcolepsy. While this portrayal is not perfect, I’ll take it any day over my generation’s unfortunate Deuce Bigalow Male Gigolo (1999). With new portrayals, increased collaboration, and representation in Hollywood (including projects like Anna Marr’s Walking Through Peanut Butter), my hope is that one day, Deuce Bigalow will be distant memory, like a Blockbuster store or a DVD. If this is the case, I will not be disappointed.

Graphic by Julie Flygare and Project Sleep

I’m thrilled to share the news that Project Sleep just launched a new Sleep Disorders in Film & TV Database to track portrayals and help support future research. There is currently no published research addressing media portrayals of narcolepsy and other sleep disorders, like other conditions such as epilepsy, multiple sclerosis, autism, and Tourette’s syndrome. If you are aware of film or TV examples not already listed on our narcolepsy graphic or other sleep disorder portrayals, please fill out the Sleep Disorders in Film & TV Database form. Thank you!

If you enjoyed this post, check out:

Project Sleep’s recent Narcolepsy Goes to Hollywood video and toolkit featuring The Simpsons’ EP, Al Jean!
PSA collab with IFC Films and Ode to Joy‘s Director
My review of Ode to Joy (2019)’s portrayal of narcolepsy with cataplexy
Narcolepsy Quick Facts
The Simpsons Modifies Homer Narcolepsy Episode “Somewhat” After Reading Narcolepsy Article

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Live Book Events: Reading Narcolepsy Memoir

julie — Mon, 10 May 2021 14:02:53 +0000

This Thursday! Join me for the FIRST-EVER online live reading of Wide Awake and Dreaming: A Memoir of Narcolepsy! I will go LIVE via my Instagram (@REMRunner) to read the first chapter of my book: Melting, this Thursday May 13th at 8pm ET.

After I read the chapter, I’ll answer any questions you have live about that chapter & share a few fun behind-the-scenes insights and tips for writers and storytellers. I plan to continue reading a chapter each Thursday at 8pm ET until we finish the book!

Of course, no worries if you cannot join live, I’ll save these to my IGTV so you can watch/listen for free anytime.

Kindle Countdown Deal:

In case you want to follow along or gift the e-book to a loved one, to kick off this new little IG book reading adventure, the e-book/Kindle version is now just $0.99 cents on Amazon.com for ONE WEEK (deal ends next Monday, May 17th & the kindle version returns to usual price of $8.99).

So excited but ready?

I’m so excited for this that I’ve already practiced reading chapter 1, and will probably practice a few more times by Thursday. I learned from recording the audiobook that READING is an art of its own.

First FUN FACT to share: the audiobook took about 3 x as long to record as the final audiobook, (which is average for an author like me, aka NOT a professional voice actor person). So, it took 2.5 days to record in studio, stopping & starting countless times, as I made mistakes reading my own book.

Also, I “trained” my voice for about 2 months leading up to that studio record, practicing 1-3 hours a day to be able to read for 7 hours straight each day without losing my voice. I hired a coach who helped me, i laughed when he said I needed to practice reading it out loud 1-3 hours a day but he wasn’t kidding… I have narcolepsy, that’s a lot of monotonous reading, so I broke these up into shorter practice sessions throughout the day, with many naps and breaks.

So, am I ready to read this LIVE on IG?! I guess we’ll find out soon. Hope you’ll tune in Thursday & thank you for your continued support!

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What’s the SOCIAL experience of living with narcolepsy?

julie — Tue, 06 Apr 2021 21:27:47 +0000

Your social life experiences with narcolepsy matter!

I’m excited to share a new survey that Project Sleep is conducting to better understand the social experiences and unmet needs of people living with narcolepsy and idiopathic hypersomnia.

This survey is for individuals diagnosed with narcolepsy or idiopathic hypersomnia (18+ years old). It should take about 10-15 minutes, and your responses are anonymous. International respondents are welcome! Take the survey by the deadline of Sunday, April 11, 2021.

TAKE THE SURVEY

Can supporters or family members of people with narcolepsy take the survey?

While we highly value the perspectives of the amazing supporters and family members in our community, this particular survey is for those diagnosed themselves. Thank you for understanding and please help us spread the word.

Improving social support for narcolepsy!

This survey is being conducted by Project Sleep, a 501(c)(3) non-profit organization dedicated to raising awareness about sleep health and sleep disorders. Your responses will help Project Sleep to better address unmet community needs in the future. Tell us what matters to YOU by taking the survey today.

The social aspects of life with narcolepsy may be invisible, but are still real! Share your input.

To collect a wide variety of perspectives, please share this opportunity with your contacts and communities. Deadline to participate is quickly approaching: Sunday, April 11, 2021.

TAKE THE SURVEY

Thank you for your invaluable support and input!

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Canadian Narcolepsy Research Opportunity

julie — Fri, 05 Feb 2021 04:06:18 +0000

?? Canadian Friends!

There is a very cool research study underway in Montreal led by top international narcolepsy researchers, currently looking for people with narcolepsy type 1, narcolepsy type 2, and idiopathic hypersomnia (IH) to participate.

Studying brain profiles of narcolepsy type 1, type 2 and IH

Description: To better understand the brain of people with narcolepsy and idiopathic hypersomnia, Concordia University (Montreal – Canada), is looking for patients that are willing to participate in scientific research. The goal of this study is to learn more about the causes and brain effects of hypersomnia. We are currently looking for people with narcolepsy or idiopathic hypersomnia that are between 18-64 years old. It may be required to temporarily stop medication to participate (e.g. 2 days for stimulants) and compensation for participation and travel expenses will be offered. For more information, please contact hypersomnia.research@gmail.com.

SEE FLYER FOR MORE DETAILS

Please spread the word so we can reach as many of our Canadian friends as possible to advance this cutting-edge research!

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Narcolepsy Treatments 2021 Update: Drug Development & Clinical Trials

julie — Wed, 20 Jan 2021 07:49:15 +0000

Drug development in the narcolepsy space has gained incredible momentum the past few years. I shared progress updates in 2018 and 2019, and am excited to publish a new update today!

There are new and upcoming narcolepsy treatment options in these categories:

Wake-promoting or stimulant medications
Histamine-directed medications
Nighttime medications
Hypocretin/orexin agonists

Wake-promoting or stimulant medications

Solriamfetol/Sunosi

Background: Solriamfetol (trade name Sunosi) is a wake-promoting agent, a dual-action dopamine and nonrepinephrine reuptake inhibitor to treat excessive daytime sleepiness in people with narcolepsy and obstructive sleep apnea.

FDA Approval: In March 2019, Jazz Pharmaceuticals announced here that the FDA approved solriamfetol/Sunosi for the treatment of excessive sleepiness in adults with narcolepsy or obstructive sleep apnea. As of July 2019, Sunosi became commercially available in the United States. Learn more.

Histamine-directed medications

Pitolisant/Wakix

Background: Pitolisant is a histamine H3 receptor inverse agonist that activates histamine neurons, which is an exciting advancement because pitolisant works via a different mechanism than other treatment options for narcolepsy. This article offers some ideas about how the treatment may work.

FDA Approval: In 2016, pitolisant (trade name: Wakix) was approved and on the market in Europe. Subsequently, in the U.S., Harmony Biosciences LLC announced FDA approval for pitolisant/Wakix for the indication of excessive daytime sleepiness in narcolepsy in 2019 and the treatment went onto the U.S. market in late 2019. In Oct. 2020, pitolisant/Wakix was also FDA-approved for the indication of cataplexy as well. Learn more.

Further Clinical Research for Prader-Willi Syndrome: As of Dec. 2020, Harmony Biosciences announced that the first patient enrolled in a Phase II trial evaluating the safety and efficacy of pitolisant for the treatment of excessive daytime sleepiness (EDS) and other key symptoms in people with Prader-Willi Syndrome (PWS). Learn more.

SUVN-G3031

Clinical Trial Opportunity: SUVN-G3031 is a novel histamine H3 receptor inverse agonist. Phase II clinical trials are currently underway for people with type 1 narcolepsy with cataplexy and type 2 narcolepsy without cataplexy. I am not familiar with the trial sponsor, Suven Life Sciences, but look forward to learning more about their efforts. Learn more.

Nighttime Medications

Low-sodium oxybate

Background: Xywav is a low-sodium alternative to Xyrem, with 92 percent less sodium per nightly dose. It is an oral solution that is administered at night in two doses.

FDA Approval: In July 2020, Jazz Pharmaceuticals announced that the FDA approved the Xywav oral solution for the treatment of cataplexy or excessive daytime sleepiness in people with narcolepsy who are 7 years of age and older. Xywav is now FDA-approved and available on the market. Learn more.

Pediatric Indication: It is exciting that Xywav was FDA-approved for children ages 7 years and up. This comes soon after Jazz Pharmaceuticals also announced here in 2018 that the FDA approved Xyrem (sodium oxybate) to treat cataplexy and excessive daytime sleepiness (EDS) in children and adolescents with narcolepsy 7 years of age and older.

FT-218

Background: FT218 is a once-nightly formulation of sodium oxybate using Avadel Pharmaceuticals’ proprietary Micropump® technology to provide an extended-release of the drug. This is being studied for the treatment of excessive daytime sleepiness (EDS) and cataplexy in people living with narcolepsy.

Under FDA Review: Since my last update, the FT218 Phase III clinical trial was completed and Avadel reported positive topline data in April 2020. Most recently, in December 2020, Avadel announced the submission of its New Drug Application (NDA) to the FDA.

Clinical Research Opportunity: An open label study is currently evaluating the long-term safety and tolerability of FT218 and the ability to switch from twice-nightly sodium oxybate to once-nightly FT218. Learn more.

Hypocretin/Orexin Agonists

Since 1999, we’ve known that type 1 narcolepsy with cataplexy is caused by a selective loss of neurons producing the neuropeptide orexin (or hypocretin), which plays a central role in maintaining wakefulness. However, finding treatments able to cross the blood-brain barrier and mimic the function of orexin has been scientifically challenging. Over the past 20 years, a few approaches have been explored, but promising research started coming out of Japan a few years ago from Takeda Pharmaceuticals.

TAK-994

Clinical Trial Opportunity: TAK-994 is an oral dose formulation OX2R agonist. Phase II clinical trials are currently underway for people with type 1 narcolepsy with cataplexy and type 2 narcolepsy without cataplexy. Learn more.

TAK-925

Studying Idiopathic Hypersomnia: Takeda is also studying how orexin agonists might work to increase wakefulness in people with idiopathic hypersomnia. The most recent phase II clinical trial examining TAK-925 for people with idiopathic hypersomnia completed enrollment in 2020. I’ll keep you posted as outcomes are results are shared!

Watch this space!

More drug developers are entering the hypocretin/orexin agonists space, including a company called Orexia. The R&D investment from multiple companies is very exciting and gives the narcolepsy community so much hope!

Last but not least….

Medications are essential, yet non-pharmacological approaches are also important to manage symptoms and address social disconnect and stigma. Coping strategies vary by person but may include:

Scheduled daytime naps
Social support such as meet-up groups or social media
Improvement in general health and wellness through sleep hygiene, diet, and fitness

A huge thank you to all those people with narcolepsy participating in clinical trials. Your participation is critical in building a brighter future!

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Am I a TYPICAL person with narcolepsy?

julie — Fri, 18 Sep 2020 04:31:03 +0000

“Am I a TYPICAL person with narcolepsy?”

No, I’m not. Here’s why:

The majority of people living with narcolepsy are undiagnosed. Up to 75% of “us” are currently either undiagnosed or misdiagnosed with other conditions.

So the most TYPICAL person with narcolepsy is walking around unaware of the true nature of their symptoms, questioning their strength, thinking they aren’t cut out for their education or career. “If only I got MORE sleep, was LESS stressed, exercised MORE, ate LESS, surely I wouldn’t be so tired…”

Or maybe the TYPICAL person w/ narcolepsy has realized something is wrong & brought this to a healthcare provider. Maybe they were told their sleepiness isn’t unusual for [insert any age group or life stage, it doesn’t matter, we’ve heard it all].

Or maybe their medical provider took their concerns seriously (yoohoo!) BUT only studied sleepfor less than 2 hours in their medical education (bummer), so sleep disorders are not top of mind, and certainly not narcolepsy, that’s so rare (oh fudge!).

Perhaps the doctor thinks of thyroid issues or depression! Or if muscle jerking/collapsing is mentioned, epilepsy. Or if hearing voices, schizophrenia. Maybe the most TYPICAL person is down one of those paths right now, taking meds that make their symptoms worse (double whammy).

Therefore, I am in the minority who got lucky, got a sleep study, diagnosis & access to treatments in a somewhat timely fashion. For me, this was 6 years.

We say: “Average delays from symptom onset to diagnosis are 8 to 15 years.”

But that’s misleading, when you think about it, capturing the experiences of only those who get a diagnosis at all. I’m no mathematician, but shouldn’t this be: “from 8 years to a lifetime” to capture 100% of people with narcolepsy’s experiences?

So, no, I am NOT typical, which is exactly WHY I am raising my voice for World Narcolepsy Day. Because I know what it feels like to fight an invisible heaviness thinking it was within my power to control.

Thinking back to those years brings tears to my eyes, even now. I wish I could reach out to younger self in Brown University’s Rock library and say, “Julie, this isn’t normal & won’t go away, go see a sleep doctor now.”

Am I a TYPICAL person*diagnosed* with narcolepsy? I’ll answer that soon. ?

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