Listen Now: New Interview on Wake Up Narcolepsy’s 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 Julie Flygare http://julieflygare.com/listen-now-new-interview-on-wake-up-narcolepsys-narcolepsy-360-podcast/…

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 …

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

Speaking at Narcolepsy UK Conference 2019!

Honored to share the news that I’ll be a featured speaker at the Narcolepsy UK Annual Conference in Manchester on Sept. 7-8, 2019. I’m so excited to share my story at this event and meet people in the UK who already feel like old friends. Read Narcolepsy UK’s announcement and register today!

I’ll never forget receiving the amazing Narcolepsy: Not Alone photo from Narcolepsy UK conference in 2013! I share this photo in every keynote presentation I’ve given the past couple years, so visiting and speaking at this conference will be very meaningful. 

Huge thank you to Matt O’Neill and Narcolepsy UK for extending this generous invitation, I’m forever grateful for our international community and can’t wait to visit the UK this fall!

Read the announcement here!

from Julie Flygare http://julieflygare.com/speaking-at-narcolepsy-uk-conference-2019/…

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 …