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.

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.


Friends, I look forward to updating you on this topic as soon as possible. Thank you for your support of this effort along with Project Sleep’s on-going proactive efforts to build a brighter future for all people with narcolepsy. Project Sleep’s programming includes: the Rising Voices fo Narcolepsy leadership training program, Narcolepsy: Not Alone campaign, Jack & Julie Narcolepsy Scholarship and our exciting new effort joining together 21 other organizations on six continents around the world to establish  World Narcolepsy Day for Sept. 22, 2019!!

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

Our Time to Shine! Behind-the-Scenes of Project Sleep’s Recent Advocacy Initiative

I was scared.

I didn’t know if you’d come with me on this path.

We’d JUST finished the incredible record-breaking Sleep In 2019 campaign, with many of you giving time and spoons to support Project Sleep.

The very next day, I learned that our advocacy moment had arrived — yay!! But with a really quick turnaround deadline — gulp!! 

It was our time to shine – our time to show Congress, NIH, & CDC that people with sleep disorders were organized and taking action. I never doubted our community’s fierce passion for the cause, but I worried about the timing, on the heels of the Sleep In and with short turnaround. People are busy and spoons are limited.

Yet, I suppose some opportunities, like adversity, come on their own time, with little regard for our neat little schedules and plans. So we try our best to go with the flow (still hard for me, but working on it).

Here We Go…

As I raced to send out the advocacy action alert on Wednesday 3/13, we effectively had 9 business days to try to get 20 Representatives signed onto an important Congressional Letter. To achieve this, we had to:

  1. reach advocates across the country,
  2. help them reach their Representatives’ offices,
  3. conduct lots of follow up.

So yeah, I was worried. I created a cheesy poster-board to broadcast our progress via Facebook Live and Instagram.

And you showed up.

Even though the process was a bit complicated and some of our important emails went to your SPAM folders (true story). For a while, there was just one Representative listed on the poster (my own), then two…

You kept showing up, you emailed, you called, you shared your stories, and you enlisted friends and family to do the same. Collectively, the project included thousands of emails with nearly 200 patient advocates reaching over 100 congressional offices on Capitol Hill, reaching districts from New Hampshire to California, from Michigan to Alabama!

The day before our deadline, on Monday 3/25, I was doing work at a Starbucks when I learned that we’d …

Sleep Advocacy & Narcolepsy Awareness in Washington DC

“One day you finally knew
what you had to do,
and began…”
Mary Oliver, The Journey

10 years ago, I ended my silence. I started writing a memoir about narcolepsy and moved to DC to begin advocating. The last decade has been a whirlwind, the lowest of lows and highest of highs, and all of that delivered me to this past week – a truly unforgettable trip back “home” to our Nation’s Capital.

Visiting FDA to Discuss People-Centered Language 

On Monday, Feb. 24, I spent the afternoon at FDA sharing about Project Sleep’s efforts to bring people-centered language recommendations to the sleep and narcolepsy research and drug development space. I really enjoyed our discussion and am so grateful for FDA’s thoughtful, caring and dedicated staff. 

Probably my biggest takeaway/reminder from this experience: culture change is a process and shifts take time. Some people (like these amazing FDA staff) are open to learning about the social science research and brainstorming ways to incorporate these findings into their work and communications! Progress, not perfection. 

I was honored to have this opportunity to help facilitate this discussion. I don’t pretend to have all the solutions but I love learning and I love sharing what I’ve learned. And what I’ve learned is: Words Matter. (Images matter too, probably even more, but I suppose that’s a topic for another day.)

On Capitol Hill to Advocate for Sleep and Sleep Disorders 

On Tuesday, Feb. 25, Project Sleep co-hosted an Advocacy Day with the Sleep Research Society. As part of our broader strategy and ongoing efforts, a small group of us took on Capitol Hill to advocate for sleep and sleep disorders research and awareness, specifically aiming to help ensure sleep-related funding at NIH, DoD and CDC.

We spent the day running from meeting to meeting (stopping for key photos, of course). We shared our personal stories and our passion for the importance of scientific advancement for people with sleep disorders, translational research, and public and professional sleep health awareness.

This is the third year of PS and SRS’s official collaboration and it’s truly been a …

5 Things You Might Not Know About Me – Drinking & Driving with Narcolepsy

Warning: you may NOT like this post, but here goes a 5 Things You Might Not Know About Me – including drinking & driving with narcolepsy (but not at the same time):

1. My car is named Delicious. There’s a minor character named Delicious in my fav Curb Your Enthusiasm episode and around that time “Delicious” was my besties and my fav word after a certain shrimp scampi incident with my friend Melissa. Yes, I talk to my car like she’s a person. And yes, I drive as a person with narcolepsy. Not everyone does but I do, I am on treatments that reduce my symptoms, I’m aware of my remaining symptoms & navigate accordingly.

2. I am an introvert & a systems level change kind of person. I never imagined that by becoming an author & advocate, I’d need to balance my drive for system-level change (aka creating a book, tools & videos) with a lot of talking to people & providing individual support services. I receive 10-50 new messages per week across various platforms with questions & requests to call or Skype. All legitimate outreaches. My heart aches. Providing emotional support is not something I was trained in & isn’t where i thrive, but i try my best. I dream of a professionally-staffed call line for narcolepsy in the US someday. Everyone deserves support.

3. Champagne and Jell-O shots are my fav bevies. I’m known by neighbors here at Melrose Place as Jell-O shot Julie or Jenga Julie (I built a giant Jenga for our pool parties). In my memoir, i talk about not drinking due to my nighttime medication but now i drink on occasion, 1-2 drinks at least 4-6 hours before considering starting my meds, so I love day-drinking.

4. I am a vegetarian. It’s a true fact about me but not central to my identity. Ive cheated about 4 times in 6 years, all cheats for crab rangoons. (I realize my love of gelatin-based gummy candy and jello makes me not a great animal lover, but oh well.)

5. I love to dance and you can prob …

Care About Research? Urge New Congress to Support Sleep & Sleep Disorders Today

Friends in the U.S., if you care about narcolepsy research (or any other area of sleep and sleep disorders research), you can play an important role in ensuring that this research is supported by our federal government. While private fundraising for research is wonderful and important too, private fundraising cannot replace the need for federal funding. These two sources work together, but one cannot magically replace the need for the other. This is why advocacy is an important part of the solution.

If you can volunteer 10 minutes of your time this week for community service, please take 10 minutes (simple instructions below) to participate. You’ll feel so empowered and accomplished educating your members of Congress about sleep issues. Deadline is this Friday, Feb. 15, so please get started today. Thank you!  🙂 

Background:

With the recent start of the 116th U.S. Congress, this is a critical time to reach out to your members of Congress to introduce yourself and share why sleep and sleep disorders are important. Your legislators will be eager to hear about your experience and our Welcome to Congress letter invites them to take action to support sleep research and awareness.

Instructions:

  1. Use House.gov [enter your zip code] and Senate.gov [pick your state] to get the contact information for your House Representative’s and Senators’ DC offices (202) numbers.

  2. Call DC office, identify yourself as a constituent, ask if you can please have the email address for the “Health Legislative Assistant.”

  3. E-mail the “Health Legislative Assistant” with a personal note (example below) and IMPORTANT: attach the Welcome to Congress letter. 

  4. Let us know you participated! Complete this quick form. 

*********

Draft Email:

Dear [Health Legislative Assistant Name],

As a constituent and an advocate for the sleep and sleep disorders community, I ask you to please see the attached Welcome to Congress letter. Moving forward, I hope your office will continue to support meaningful funding increases for medical research programs and further enhance the emerging research portfolio in forgotten sleep disorders.

[insert your brief personal story]

Thank you for your time and your consideration of this information.

Sincerely,
[Your Name]
[Your Address, City, …

One Year Ago: Living the Fullest Expression of My Dreams

One year ago, I texted my best friend: “I’m going to quit my job now. Please don’t let me become homeless.” She reassured me I’d be okay.

So, I stepped into my boss’ office with legs shaking, and jumped out into the most surreal section of my professional life.

Feb 12th will officially mark one year as President & CEO of Project Sleep. While not every day is a breezy success and I still have a lot to learn, I get to wake up every single day to serve the cause closest to my heart (without also working another full-time job and without the 2.5 hours of driving daily).

“A complete life is a life lived in participation of this inner vision of oneself and also extending it to another.”  Dhyan Vimal

Perhaps the most surreal part of this past year has been leading the incredible crew of Rising Voices of Narcolepsy advocates, watching them gain strength and confidence before my eyes.

When they thank me, I find myself looking around the room for the REAL adult, the person they should be thanking, because I feel equally thankful and still sort of like an enthusiastic kid playing grown up.

I am forever grateful to each of you for giving me your TRUST and for believing in this movement. Your support shines in many forms — in fundraising, donating, and participating in our action alerts, programs and events. I want you to know I don’t take one ounce of your trust and support for granted.

I will continue to work my butt off to make you proud and to make progress through powerful awareness and advocacy efforts — because this is the only way I know how to say thanks. And this is just me, a girl lucky enough to be living out the fullest expression of my love, vision and dreams.

Photo above by: Michelle Zagardo

from …

The Stories We Share Today Become the World We Live In Tomorrow

I’m thrilled to share Project Sleep’s new narcolepsy awareness video series. These videos feature five of our Rising Voices of Narcolepsy speakers sharing their personal stories, interwoven with key narcolepsy facts. I hope you will be as moved as I am by these brave stories and share them today: WATCH NOW

SHARE ON FACEBOOK

TWEET IT  

Why is this work important? 

Did you know? Research indicates that storytelling is one of the most powerful ways to foster empathy, raise awareness and reduce stigma for people with misunderstood conditions like narcolepsy.

It may be easier to share facts and figures, but is this “sticking” with your audience? Sharing our own stories can feel overwhelming and vulnerable. It’s not easy, but I love working with our Rising Voices of Narcolepsy speakers and writers to hone in the elements of their story that will help build empathy and create memorable moments in the minds of audiences.  In the Rising Voices of Narcolepsy training, we also include narcolepsy information, but we fold this in carefully alongside storytelling, for greater impact. 

Why is this so emotional for me personally?

People often ask me if and when I’ll write another book. I’m honestly not sure, but I DO know that the chapters following the finish line of the Boston Marathon have been a wild ride, and most recently – totally surreal and deeply meaningful.

To go from sharing my own story to helping others share their stories — it is a dream come true for me. There is a lot of creativity in this work too, it’s just different and more behind-the-scenes, which I like as an introvert. 

Why share OTHER people’s stories?

Now, I don’t have any research to back up this claim, but I find that sometimes it can be more effective for our loved ones to hear about someone else’s experience with narcolepsy. I have no clue why, but it’s been my experience that some people might be skeptical when I describe something, but when they hear another person or two describe the same thing, it starts to resonate or sink in. Have you …

2018: A Groundbreaking Year for Narcolepsy Research & Drug Development

“We are witnessing a revolution of our understanding of narcolepsy.”

– Dr. Emmanuel Mignot, M.D. Ph.D.,
Director of the Center for Sleep Sciences and Medicine, Stanford University

2018 was an exciting year for narcolepsy research and drug development. Here’s my top six research highlights of 2018 that you should know about!

1. Narcolepsy & the immune system

Photo Source: Nature

This fall, two new publications offered key insights into the biological underpinnings of type 1 narcolepsy with cataplexy. These findings could lead to new diagnostic procedures and preventive strategies in the future. 

In September, Latorre and colleagues’ ground-breaking Nature publication indicated that particular immune cells (called T cells) may be involved in the attack on hypocretin/orexin neurons in type 1 narcolepsy.  These findings further the leading theory that narcolepsy may be an “autoimmune condition.” (Here’s a great lay-friendly summary.)

In December, Luo and the Stanford University group’s publication in the Proceedings of the National Academy of Sciences offered interesting complimentary findings, suggesting that these immune cells may mistakingly attack hypocretin/orexin neurons that “resemble” certain pieces of flu virus. The research is more complex and exciting than my brief summary, I recommend Dr. Emmanuel Mignot’s  recent Thrive Global article to learn more.

2. Classifying type 2 narcolepsy without cataplexy 

Ruoff and colleagues’ Journal of Clinical Sleep Medicine publication raised important awareness about the challenges in classifying and diagnosing type 2 narcolepsy without cataplexy (NT2). The study indicated that repeating the MSLT (the daytime portion of the 24-hour sleep study) led to inconsistent results for narcolepsy type 2 cases, changing to idiophathic hypersomnia 26% of the time, or to a negative MSLT 57% of the time.

This is not a good situation, but researchers are starting to use “big data” and “machine learning” to re-examine how we might better cluster and separate narcolepsy and IH cases by key characteristics and measurements. See Zhang’s Nature publication. Important discussions are underway and I believe this will be an evolving space in the coming years. For those facing a diagnosis “in between NT2 or IH,” please remember your experience is real and you are part …

2018: My Year in Review

2018 was a year unlike any other. I invested in a few new suitcases, which helped me get around easier since I don’t think I’ve ever traveled so much in one year. Here are some highlights, challenges, favorite reads, lessons learned and dreams for the new year!

Highlights of 2018:

  1. Taking the leap to become the first employee of Project Sleep was one of the biggest, boldest changes I’ve made in my life
  2. Traveling to Taiwan, Sweden and Australia – wow! 
  3. Attending the International Symposium on Narcolepsy
  4. Participating in the Suffering the Silence video & photo shoot
  5. 15 Speaking Engagements – sharing my story of narcolepsy in various settings from high school and college classrooms to hospitals and conferences
  6. Many of my favorite moments are intertwined Project Sleep’s 2018 Accomplishments

Biggest Challenge of 2018:

Recording the AUDIOBOOK for Wide Awake & Dreaming: A Memoir of Narcolepsy (finally)!! Going into this, I had no idea how much work would be involved in learning how to narrate my own book. I mean, I wrote it, how could reading it be challenging?!  I shared funny behind-the-scenes stories about the process in this video

Favorite Reading of 2018:

  • Secret Stairs of Los Angeles by Charles Fleming – I totally fell in love with exploring Los Angeles through this book, I’ve completed 8 of the 42 walks so far! 
  • The Humor Code by Peter McGraw and Joel Warner – thought-provoking in thinking about how narcolepsy became a “joke” and also in thinking about cataplexy’s connection to humor.
  • Stop Raising Awareness Already  by Ann Christiano and Annie Neimmand. This article blew my mind, so I subscribed to Stanford Social Innovation Review and now I read each issue cover-to-cover. This magazine is helping to improve my understanding of the non-profit sector and behavior change campaigns. 

Favorite Meal of 2018:

Does gummy candy count as a favorite meal?! Probably not… Hmmm…  😛 

I fell in love with the Vete-Katten bakery/cafe in Stockholm and spent a few leisurely mornings here – reading a book, sipping oat-milk lattes, and eating cardamom rolls and coconut chia puddings. This …

Representing Narcolepsy in Suffering the Silence Video & Photo Shoot

Hollywood’s portrayals of narcolepsy are notoriously inaccurate. For one day, the script was different, thanks to Suffering the Silence, AwesomenessTV and Visible. I was so proud to represent narcolepsy in this cool new video!

Watch Video:

Watch this video on YouTube.

Hello Hollywood!

The morning of the Suffering the Silence filming and photo shoot, I arrived at the fancy AwesomenessTV studio in Hollywood with wide eyes. It was hard to believe that I, Julie Flygare, was supposed to be here.

Entering the studio, I was excited to meet up with Erica Lupinacci and the four other “models” for the day – amazing women with chronic conditions including Madison, Gianna, Siobhan and Stephanie.

To be honest, going into this day, I’m not sure I fully understood what we’d be doing, but if it had to do with Suffering the Silence, I was in!

Silent No More

When I first saw the original Suffering the Silence campaign a few years ago, it took my breath away. Quickly, I added my photo and posted about it here.

Since then, I’ve been lucky to get to know the leaders of Suffering the Silence, Allie Cashel and Erica Lupinacci, and I’ve loved watching their movement grow into a 501(c)(3) organization accomplishing innovative work in the chronic illness space. Allie and Erica are rare gems- authentic, articulate, professional, and in tune with young adults living with chronic conditions across America.

I attended Allie’s book reading a few years ago and was honored to read from my own memoir at a Suffering the Silence event last year in LA, meeting other talented writers with chronic conditions. So when Erica invited me to participate in this Hollywood filming/photo thing, I said YESSSS right away! She had me sold at “hair, makeup and wardrobe provided.

The Works

Truly, this whole day was a treat. The hair, makeup and wardrobe stylists were incredible. I know it sounds cheesy but I honestly felt really pretty! I felt both myself and so not myself because my look was SO GLAM, including bright lipstick, fake eyelashes, and a