Share! Narcolepsy with Cataplexy PSA Video with Ode to Joy Movie

Originally at: http://julieflygare.com/share-narcolepsy-with-cataplexy-psa-video-with-ode-to-joy-movie/

Friends: I’m SO beyond thrilled to share the news with you today that Project Sleep proudly partnered with IFC Films and Ode to Joy Director, Jason Winer, to create a PSA to raise awareness about narcolepsy with cataplexy.

Please watch and share with friends!

Watch this video on YouTube.

Teamwork makes the dream work

I am so grateful to Jason and IFC for their enthusiasm and partnership. Creating this video was a team effort, with significant contributions by many thoughtful people. Most notably, a huge shout out to Hannah Powell for making this project a reality and working with myself and Project Sleep every step of the way!

How this came to be

Over the past year, I researched how other disease communities have worked with and responded to the film industry in similar situations. I interviewed health communications experts and people in “the industry.” I learned A LOT. (Honestly, it would be another post entirely to explain how eye-opening this process was, but I’ll link to my fav articles at the bottom of this post.)

Since Ode to Joy was in post-production as of late 2018, influencing the content of the actual film itself was unlikely. Experts advised me to focus “my asks” on the marketing and distribution phase. 

One of my key “asks” was to collaborate on a short PSA to raise awareness about narcolepsy with cataplexy surrounding the film’s release. Examples I’d seen included Netflix’s To The Bone Nine Truths PSA and The Emoji Movie‘s Stand Up to Bullying campaign.

Once in communication with Ode to Joy’s team, I presented “my asks” and director, Jason Winer, loved the PSA idea and quickly committed to working together to make this happen. This was a surreal moment! I’d spent months researching and formulating my asks, and now it was “go time!”

If you ask for what you want, you better be ready in case you get it!

I had ideas for the PSA and was happy to draft the script, but it was certainly a major undertaking! Jason and I decided to keep this to under one minute. My first draft was around 300 words and the final is about 140 words. I agonized over the pros and cons of each word choice with the help of a few close colleagues and friends.  

About a week before filming, Jason and I agreed that I would join him as “talent” in the PSA. This wasn’t my original plan, but ultimately it made sense, and I liked the idea of a real person with narcolepsy with cataplexy being in the video. 

On the morning …

Are Sleep and Happiness Related? Listen Now To Find Out!

Originally at: http://julieflygare.com/are-sleep-and-happiness-related-listen-now-to-find-out/

I was honored to be a guest on the More Happy Life Podcast with Andy Proctor recently. We talked sleep, spoons, narcolepsy, storytelling, happiness, dreams and more. Listen here.

Episode description: In this episode we talk about all things sleep and much more! How does sleep impact our energy, mood, and clarity? How much sleep do we need each night? How did you discover your narcolepsy? How can we improve our sleep patterns? Should naps be allowed and supported at work? Let’s talk about dreams and remembering dreams. What would you tell people who just found out they have narcolepsy? Find your self affirming voice within all the voices in your head. This will make you happier. 

It was such a joy to share this conversation with Andy and now I’m really enjoying listening to his other More Happy Life podcast episodes too! Listen to our conversation here.

from Blog – Julie Flygare http://julieflygare.com/are-sleep-and-happiness-related-listen-now-to-find-out/…

“Ode to Joy” Movie Review From A Person Living with Narcolepsy with Cataplexy

Originally at: http://julieflygare.com/ode-to-joy-movie-review-from-a-person-living-with-narcolepsy-with-cataplexy/

Today, the new feature film, Ode to Joy opens in select theaters (in New York and Los Angeles) and releases via video on demand across the United States. Ode to Joy is a movie about a man, Charlie (played by Martin Freeman) navigating romance while living with narcolepsy with cataplexy.

I was not involved in the development or filming of this movie, but I’ve been interested since the film was announced in 2011, based on the This American Life segment “I’m Fallen In Love and I Can’t Get Up.” This past April, I attended a showing of Ode to Joy at the Phoenix Film Festival, with Project Sleep board member, Ed Sweet.

As President & CEO of Project Sleep, seeing the film as soon as possible was important to me. Representations of narcolepsy in film provide valuable insight into public perceptions and understanding of the condition. For many individuals, cinematic depictions of narcolepsy may be their only exposure to the symptoms. Thus, patient-driven organizations like Project Sleep, along with narcolepsy advocates and medical professionals, will all benefit from being aware of movie portrayals and joining the conversation as much as possible.

As a person living with narcolepsy with cataplexy myself, I was nervous to see the film. Generally, I close my eyes when clinicians play videos of cataplexy at conferences. Also, I have a short YouTube playlist of other people’s cataplexy episodes and inevitably, tears stream down my face watching these.

Going into seeing the film for the first time, my burning questions were:

1.) How will the movie depict and describe cataplexy? 
2.) How will the movie depict and describe narcolepsy?
3.) How will it depict treatment?
4.) How will it depict the condition’s impact on life? 
5.) Will there be resources exemplified during the film or offered at the end?
6.) Will the film help to raise awareness and/or reduce stigma?
7.) Will I find the movie funny?

Here are my responses. WARNING: from this point on, this post contains spoilers.

1.) How will the movie depict and describe cataplexy?

Physical manifestations: 
I was curious to see how Martin Freeman might act out cataplexy on camera. Cataplexy is such a unique form of muscle weakness/paralysis that can be so sudden and jerky, even I find it hard to “re-enact” on purpose, even having lived with it for over 14 years now.

The physical manifestations of cataplexy in Ode to Joy ranged from accurate (i.e. a knee-buckling and crumbling inward/downward to the ground) to inaccurate (i.e. rigid plank tumbling backward). I would love to know how Freeman prepared for this role – what examples …

Celebrating 20 Years of Hypocretin/Orexin: Narcolepsy’s Big Breakthrough

Originally at: http://julieflygare.com/celebrating-20-years-since-narcolepsys-big-breakthrough-hypocretin-orexin/

LET’S PARTY LIKE IT’S 1999:

Twenty years ago today, a dog named Kahlua was on the cover of the journal Cell. Kahlua was a doberman pinscher with canine narcolepsy and an important piece of history.

Today marks 20 years since Dr. Emmanuel Mignot, MD, PhD, and his team at Stanford University published their key paper in Cell on the genetic mutations responsible for canine narcolepsy. The paper identified that mutations to the hypocretin (orexin) receptor 2 gene caused canine narcolepsy in Kahlua and the Doberman colony at Stanford, a discovery that had important implications for sleep science and humans with narcolepsy.

Mignot’s breakthrough was part of an amazing flurry of scientific discoveries, each building on one another. In 1998, Luis de Lecea, PhD, while at Scripps Research Institute, first discovered that hypocretin existed. Building on this, Mignot’s team published their key paper on August 6, 1999 and just two weeks later, on August 20, 1999, Masasi Yanagisawa and his group at the University of Texas also published in Cell implicating hypocretin (orexin) in mice with narcolepsy-like symptoms.

In Sleepyhead: The Neuroscience of a Good Night’s Sleep, author and fellow person with narcolepsy, Henry Nicholls eloquently tells the riveting history in Chapter 5: Sleeping Dogs Don’t Lie. My summary doesn’t do this story justice, I highly recommend Nicholls’ book!

In 2000, further research suggested that hypocretin was not present in the cerebrospinal fluid of people with narcolepsy. That same year, two groups, Mignot’s team and another led by Jerome Siegel, PhD at UCLA found that the lack of hypocretin in humans with narcolepsy was not due to gene mutations (as was the case with the dogs) but due to hypocretin cells actually being missing in their brains.

So while August 6, 1999 was not the beginning or the end of the hypocretin(orexin) story, it was a huge leap of progress and a moment with celebrating today. This discovery flurry spurred many more questions like: How did hypocretin go missing in the brains of people with narcolepsy? Could targeted treatments be developed to address this deficiency?

1999 – PRESENT:

Recently, I caught up with Dr. Mignot to ask him how he felt about the 20th anniversary of his discovery.

“The ride has been spectacular,” described Dr. Mignot. “From isolation of the hypocretin/orexin receptor gene in dogs, to the autoimmune basis of narcolepsy and the implication of the H1N1 flu as a trigger and now hypocretin/orexin agonists to treat patients, it has never been as exciting.” 

Personally, I wasn’t part of the narcolepsy world in 1999, as I still had my hypocretin. My “grand entrance” came a few

Listen Now: CALM + COZY podcast interview

Originally at: http://julieflygare.com/listen-now-calm-cozy-podcast-interview/

Apparently I felt comfortable and a bit snarky on the day that I recorded this CALM + COZY podcast interview with the amazing host, Beth Wyatt (@sleepcoachbeth on IG), because I’m pretty honest and animated here!

Beth asked great questions that led to unique conversations not part of my usual “talking points” repertoire. My favorite discussion came after Beth asked:

“What advice would you give someone approaching their primary care doctor about a possible sleep disorder?”

I’d love to hear YOUR thoughts on this topic too. It’s not always easy to get primary care doctors to consider a sleep consult. 

Beth: Thank you for this terrific opportunity to share my story and my passion for Project Sleep. I’m forever grateful to call you my friend and fellow sleep advocate!

Listen to the podcast interview now and let me know what you think in the comments below!

from Blog – Julie Flygare http://julieflygare.com/listen-now-calm-cozy-podcast-interview/…

Listen Now: New Interview on Wake Up Narcolepsy’s Narcolepsy 360 Podcast

Originally at: http://julieflygare.com/listen-now-new-interview-on-wake-up-narcolepsys-narcolepsy-360-podcast/

A few months ago, I had the pleasure of sitting down with Claire Crisp, Executive Director of Wake Up Narcolepsy (WUN), to record an interview for WUN’s Narcolepsy 360 podcast.

This was a meaningful experience and a lot fun to share this conversation with Claire, who is an amazing leader, advocate and friend in the narcolepsy community. We talked about our books, my personal experience with narcolepsy, and what drove me to found Project Sleep. I also shared some behind-the-scenes reflections on Project Sleep’s awareness and advocacy efforts along with some personal advice for others living with narcolepsy. 

Thank you to Claire, Elizabeth & the WUN team for including my story and Project Sleep’s efforts in this great podcast series. Listen now: https://www.wakeupnarcolepsy.org/get-involved/podcast/

from Blog – Julie Flygare http://julieflygare.com/listen-now-new-interview-on-wake-up-narcolepsys-narcolepsy-360-podcast/…

Seattle! Speaking Sleep Advocacy and Narcolepsy Awareness

Originally at: http://julieflygare.com/seattle-speaking-sleep-advocacy-and-narcolepsy-awareness/

Seattle: I’m so excited to visit soon for three speaking engagements!

1.) Speaking Advocacy at the Hypersomnia Education Meeting

I’m extremely honored that the Hypersomnia Foundation has invited me to speak about Project Sleep’s Advocacy at their upcoming Hypersomnia Education Meeting on Saturday, June 29, 2019, taking place from 10am – 3pm at the Seattle Airport Marriott. This event features a lineup of terrific speakers including the always amazing Dr. David Rye!

My Presentation Description: Scientists are making progress, but more research is urgently needed to better understand and treat idiopathic hypersomnia (IH) and other serious  sleep conditions. What can we do as patient advocates to accelerate research? One important approach is through strategic advocacy efforts. In this presentation, Flygare will demystify the advocacy process, highlight recent sleep community successes, and empower attendees with simple steps to take action. Attendees will gain a better understanding of how each of our voices makes a difference in educating decision-makers and advancing research to improve outcomes for those living with sleep conditions including IH.

Learn more and register here: https://www.hypersomniafoundation.org/event/seattle-meeting-2019/

2.) Narcolepsy Presentation with Northwest Narcolepsy Support Group

On Sunday, June 30, 2019, at 11:00 a.m., I will share my inspiring narcolepsy presentation “When Dreams Leave the Night” with the Northwest Narcolepsy Support Group. Please join us for this event, I believe the exact location details are being worked out now, so visit the Northwest Narcolepsy Support Group website to keep up-to-date on the details of this event: www.northwestnarcolepsy.org

Presentation Description: In this presentation, Julie will share her personal journey from facing mysterious symptoms in law school through receiving a narcolepsy diagnosis and becoming an advocate and author.  After her presentation, Julie would be thrilled to hear more about your group’s experiences with narcolepsy, answer any questions, sign books and share awareness materials.

3.) Narcolepsy Presentation for the UW Medicine Sleep Conference 

Last but not least, on Tuesday, July 2nd, I will share my first-hand patient-perspective narcolepsy presentation with the University of Washington Medicine sleep fellows during their Sleep Conference. I love speaking with healthcare professionals and look forward to this awesome opportunity. 

Wow, this should be another whirlwind trip, after my adventures in Texas earlier this month (which I still need to re-cap for you soon).  Please send extra spoons my way and I hope to see some of you in Seattle soon!

from Blog – Julie Flygare http://julieflygare.com/seattle-speaking-sleep-advocacy-and-narcolepsy-awareness/…

Join Us in Austin for the Central Texas Narcolepsy Forum

Originally at: http://julieflygare.com/join-us-in-austin-for-the-central-texas-narcolepsy-forum/

Friends, I’m thrilled to share the news that Project Sleep is co-hosting a unique one-day event in Austin, TX with the Austin Narcolepsy Support Group on Saturday, June 15, 2019 from 10:00 a.m. – 3:00 p.m. Please join us for the Central Texas Narcolepsy Forum – see the full details and register today! 

Why am I so excited about this event?

  1. Todd J. Swick, MD is one of my very favorite people and narcolepsy experts! I’m so honored that Dr. Swick will join us for this event and share about novel upcoming treatments for narcolepsy type 1, type 2 and idiopathic hypersomnia. This is a VERY exciting time for narcolepsy drug development with many new options on the horizon, so Dr. Swick’s presentation is timely and important.
  2. In the afternoon, I’ll be leading a brand-new interactive workshop designed to help you effectively share your story in various settings from the dinner table to Capitol Hill. Sharing about our experiences with narcolepsy can be challenging, but our stories matter and are hugely effective tools for raising awareness and advocacy efforts.
  3. I’ve never been to Austin but heard great things! Plus, I’ve been in touch with the narcolepsy community there for many years now. A HUGE special shout out and thank you to Kami Barron and the Austin Narcolepsy Support Group for making this a reality! I’m so grateful for your kind invitation to speak in Austin.

Who Should Attend?

This event is appropriate for anyone looking to learn more about narcolepsy, both those very familiar with the condition along with healthcare providers, human resources and education professionals. 

Spread the word!

Print and share the event flyer or share this post with friends and family on social media.

See the full details and register today! Space is limited.

from Blog – Julie Flygare http://julieflygare.com/join-us-in-austin-for-the-central-texas-narcolepsy-forum/…

Upcoming Movie, Ode to Joy, Featuring Narcolepsy with Cataplexy Portrayal

Originally at: http://julieflygare.com/upcoming-movie-ode-to-joy-featuring-narcolepsy-with-cataplexy-portrayal/

Today, Project Sleep issued the following public statement after receiving many questions from community members about the upcoming feature-length movie, Ode to Joy. I look forward to sharing more news as soon as we can. Thank you for your incredible support of Project Sleep’s efforts to improve outcomes for people with narcolepsy through our programming including the Rising Voices fo Narcolepsy leadership training program, Narcolepsy: Not Alone campaign, Jack & Julie Narcolepsy Scholarship and our exciting new effort joining 21 other organizations around the world to establish the inaugural World Narcolepsy Day for Sept. 22, 2019!!

Project Sleep’s Public Statement: Narcolepsy Portrayal in Film, Ode to Joy

Los Angeles, CA, April 10, 2019 — Project Sleep would like to inform our supporters and the narcolepsy community that we are aware of Ode to Joy — an upcoming feature film depicting a main character portrayal of narcolepsy with cataplexy. The portrayal was inspired by a 2010 NPR This American Life segment titled “I’ve Fallen In Love and I Can’t Get Up.”

Project Sleep is committed to advancing our bold goals to increase the public’s knowledge of narcolepsy to 80% by 2025; reduce delays in proper diagnosis from 8-15 years to two years by 2030; and reduce stigma for those living with narcolepsy. We understand the primary goal of film is entertainment, while also recognizing the role entertainment plays in helping to shape societal perceptions of health conditions like narcolepsy. We have been in conversation with the producers over the past few months about possible opportunities to work together to raise awareness. We look forward to continuing this conversation with the film’s team and continuing to do everything we can to amplify the voices of people living with narcolepsy and their loved ones through our organization’s programming and public relations efforts. 

Sign up for our e-updates to be the first to know about important news and program announcements.

from Blog – Julie Flygare http://julieflygare.com/upcoming-movie-ode-to-joy-featuring-narcolepsy-with-cataplexy-portrayal/…