Special Online Event: Presenting My Narcolepsy Story & Book Reading

Originally at: http://julieflygare.com/special-online-event-presenting-my-narcolepsy-story-book-reading/

Join me for a very special FREE ONLINE EVENT!

This Sunday, May 10th at 8:00 p.m. EDT, tune in to Project Sleep’s Facebook Page to hear my inspiring narcolepsy presentation and to read a few favorite passages from my memoir. Full details about the broadcast.

I’ve presented this around the world in Italy, Ireland, Sweden, Australia and the United Kingdom, but never live online like this. 

About the Talk:

In this unique broadcast, I will share her journey—from wanting to push narcolepsy out of my life to finding self-acceptance, writing Wide Awake and Dreaming: A Memoir of Narcolepsy and founding Project Sleep. I will read a few favorite passages from my book. In addition, I will share what’s helped me to “live well” with narcolepsy, offer tips to get started in advocacy and awareness, and answer questions from live viewers.

Spread the Word

Please share this opportunity with friends and family – I promise the broadcast will be fun, thought-provoking and moving — because that’s how I roll!  

Giving this online presentation is honestly a special moment for me so thank you for your support –  I cannot wait! Thank you for your support.

Full Event Details: https://project-sleep.com/special-broadcast-julie-flygares-narcolepsy-story-book-reading-live/

from Blog – Julie Flygare http://julieflygare.com/special-online-event-presenting-my-narcolepsy-story-book-reading/…

The Power of Community: Supporting One Young Man with Narcolepsy Lifts Us All

Originally at: http://julieflygare.com/the-power-of-community-supporting-one-young-man-with-narcolepsy-lifts-us-all/

These are unprecedented times in the wake of COVID-19. I am sending virtual hugs, healthy vibes and restful nights to each of you. During a time when things feel pretty heavy, I wanted to share a heart-lifting story from my past week.

Background:

In late February/early March, Project Sleep (in conjunction with the Sleep Research Society) conducted a big “action alert” asking advocates to reach out to their Representatives across the US. The community rallied together incredibly, and as a result, a remarkable 41 Members of the U.S. House of Representatives signing onto an important letter advancing our sleep research and awareness priorities!

That was huge for the House side, but next we needed to work on the Senate side.

Team Missouri:

On the Senate side, we conducted a more “targeted” effort, preparing a letter to Senator Roy Blunt of Missouri, because he serves as the chairman of an important subcommittee that will make decisions regarding the possible CDC sleep awareness efforts. 

Last week, I contacted a few Missouri patient advocates to ask them to consider signing onto the letter to their Senator Blunt, and one advocate, Karin offered to gather additional Missouri advocates to sign on! She asked how many names might be impactful… I reported back that a dozen or two dozen would be amazing. 

Corresponding with Karin:

And then yesterday, I opened my email to find that Karin had rallied an incredible 47 individuals and families in Missouri to sign onto the letter, all in support of one young man in their community living with narcolepsy with cataplexy. Karin wrote:

Julie:  Please add the attached list of advocates from the state of Missouri in support of this letter. 

We have a young man in our lives who is living with narcolepsy with cataplexy, and any funds which can be obtained to educate professionals and the public about these types of disorders has our full support. 

I wrote back to Karin:

Karin,

Thank you so much for this message and incredible news!! WOW! You’ve collected so many names, you did such a tremendous job and this list of supporters will go so far with Senator Blunt’s office.

Getting your email also brings me to tears today, because, of course, it is such a challenging time for so many people and so much feels out of our control. So to see you and your community rally behind this young man’s experience this way, and organize with us to advance research and awareness for a brighter future, it truly means everything and lifts my heart. 

I was already feeling emotional when I received Karin’s reply:

Julie: 

“Soooo, you can just, like, fall asleep?!” Spoken Poetry on Narcolepsy

Originally at: http://julieflygare.com/soooo-you-can-just-like-fall-asleep-spoken-poetry-on-living-with-narcolepsy/

“Soooo, you can just, like, fall asleep?!”

This video moved me to tears. Please watch and share Kara Sulzer’s powerful spoken poetry on living with narcolepsy. Kara cuts right to the heart of so many key aspects of living with narcolepsy so quickly, discussing the symptoms, the social misperceptions and the BEST question she ever received. 

Watch this video on YouTube.

Thank you to my friend, Sleep advocate and Rising Voices of Narcolepsy speaker, Matthew Horsnell for bringing Kara’s video to my attention.

from Blog – Julie Flygare http://julieflygare.com/soooo-you-can-just-like-fall-asleep-spoken-poetry-on-living-with-narcolepsy/…

A Moment I’ll Cherish Forever: Meeting my Representative Adam Schiff

Originally at: http://julieflygare.com/a-moment-ill-cherish-forever-meeting-my-representative-congressman-adam-schiff/

On Tuesday, Feb. 10th, I had the opportunity to meet my Representative, Congressman Adam Schiff and thank him in-person for championing the sleep community priorities in Congress for the past three years. I was in Washington, DC for Project Sleep and the Sleep Research Society’s February Hill Day on Monday, Feb. 9th. See our event recap and photo album!

But let me back up. In 2017, I had no idea that upon sharing my story and my passion for Project Sleep with my Representative’s health staffer, that his office would end up championing our cause on Capitol Hill.

But that’s exactly what happened: Congressman Schiff stepped forward to lead multiple important “Dear Colleague” letters — that other Representatives (on both sides of the aisle) have signed onto in support of advancing sleep & sleep disorders research via NIH, DoD, and the VA and sleep awareness via CDC. Read more about our efforts here.

YOU have helped make these efforts a success by reaching out to your Representatives to ask them to sign onto these letters. So collectively, all of our efforts combined are making a difference. And how do we know our efforts are making a real difference? Multiple amazing researchers have shared with me they believe our advocacy is helping them secure important research grants. Wow! 


Get involved! You play an important role in our next steps, starting with an advocacy webinar on Tuesday, March 3 at 2pm ET! RSVP here, even if you can’t make it live on March 3rd, RSVP anyway to receive the webinar recording. We will help everyone who signs up to take action!

Sleep touches every one. It is not a partisan issue. Our only opposition is lack of awareness. Sleep is an underdog cause in our society, which is why I love this challenge and why having policy makers like my Representative Adam Schiff on our side, it means the world to me.

As I left the office, Congressman Schiff thanked me for my advocacy. It was a moment I’ll never forget and I wish YOU had been with me to receive this thanks in-person too. Raising our voices matters!

from Blog – Julie Flygare http://julieflygare.com/a-moment-ill-cherish-forever-meeting-my-representative-congressman-adam-schiff/…

#SleepIn2020 Deadline TODAY for T-Shirts

Originally at: http://julieflygare.com/sleepin2020-is-coming-deadline-today-for-t-shirts/

Project Sleep’s SIXTH annual “Sleep In” will take place on March 13-15, 2020, but today, Feb. 18th is the deadline to order your official shirts. Please support our shirt fundraiser here. 

 

 

 

Get shirts for the whole fam!

Honestly, I get compliments and questions about my Sleep In t-shirts every time I wear one. It’s a “stylish conversation starter.”

 

 

 

 

 

 

 

 

 

 

Next Stepzzz:

Once you’ve ordered your shirts before the deadline (2/18 at midnight ET), head over to the Sleep In registration page to sign up to participate. It’s FREE, all we ask is that you care about sleep health and sleep disorders awareness. 

 

 

 

 

 

 

 

This is my favorite weekend of the year.

Over the course of the #SleepIn2020 weekend (March 13-15, 2020), we will be in bed flooding social media and connecting virtually to help our society make peace with sleep.  There will be online events including a DJ set via Twitch with the amazing DJ Fe, prizes, bedtime stories, and lots of rest!

Important Sleep In 2020 links:

I can’t wait to Sleep In with you soon!

from Blog – Julie Flygare http://julieflygare.com/sleepin2020-is-coming-deadline-today-for-t-shirts/…

Exciting News! Giving a TEDx Talk in San Diego

Originally at: http://julieflygare.com/exciting-news-giving-a-tedx-talk-in-san-diego/

SO beyond excited to share this news: I’ll speak at TEDxSDSU on March 22, 2020 in San Diego, CA!

Giving a TEDx talk has been a major life goal for about 7 years now, when i put it in my art journal as one of my major aspirations. And I’ve applied to many over the years.

“Your dream doesn’t have an expiration date. Take a deep breath and try again.” —KT Witten

So securing this talk at San Diego State University was a huge surprise and surreal moment of pure joy — which definitely caused me to have cataplexy when i first opened the “congratulations” email.

You might’ve seen my somewhat secretive IG stories recently about working hard on a “important first draft.” This was for my TEDxSDSU talk.

Is my first draft perfect? NOPE.

But it WILL come together. It always does… even if the process is kind of intense and overwhelming to me, it will be worth it for the moment I walk onto that stage in two months.

As always, I hope to make you proud and to effectively share a message I believe in. Thank you for your incredible support — this community inspires me and gives me courage every single day!

I’ll share more details about the TEDxSDSU event as they become available and as tickets go on sale in February! For now, please send extra spoons and smart-thinking speech-revising vibes my way.

from Blog – Julie Flygare http://julieflygare.com/exciting-news-giving-a-tedx-talk-in-san-diego/…

You’re Invited! Join Me for Project Sleep’s New Year’s Celebration

Originally at: http://julieflygare.com/youre-invited-join-me-for-project-sleeps-new-years-celebration/

Tune in this Saturday, Dec. 28th, 2019 at 12:00 noon ET for a very special  New Year’s Facebook LIVE—celebrating your amazing 2019 and looking ahead with a sneak peek of 2020! On behalf of Project Sleep’s leadership, I will broadcast live from Los Angeles to Project Sleep’s Facebook page this Saturday, Dec. 28th at 12noon ET.

You have accomplished SO much through Project Sleep’s awareness and advocacy programs this year. We can’t wait to share the story of your collective impact back to you because it’s a tremendous story of courage, hard work and making a difference!

To watch live, go to Project Sleep’s Facebook Page (https://www.facebook.com/ProjectSleepAwareness/) at 12:00 noon ET on Sat. 12/28. The live video will show up in our newsfeed shortly after 12noon ET.

Please spread the word to anyone interested. Happy Holidays, friends!

from Blog – Julie Flygare http://julieflygare.com/youre-invited-join-me-for-project-sleeps-new-years-celebration/…

“I will change how I treat my patients because of your talk.”

Originally at: http://julieflygare.com/i-will-change-how-i-treat-my-patients-because-of-your-talk/

Last month, I gave one of my favorite presentations at the 10th Biennial Pediatric Sleep Medicine Conference hosted by my alma mater, Brown University.

My “TED-style talk” had two key messages:

  1. Prescribing social support to people with narcolepsy,
  2. Partnering with patients, patient leaders and organizations to develop patient-centered research toward recognizing and addressing stigma.

I’d spent months preparing for this speech. Having only 18 minutes, every second mattered. I practiced and revised and revised more. Arriving at the conference, the room was much bigger than I’d expected, between 200-300 pediatric sleep researchers, doctors and technicians in the audience. 

Once on stage, I didn’t get through my material perfectly, but I hit the emotional arch I wanted and I articulated my first key messages in new ways that I believe resonated strongly.

The response was tremendous, people stopped me all weekend to thank me, even as I loaded my suitcases into my lyft the next day, a doctor approached me to say that she is going to change how she treats her patients because of my talk. Wow!

Also kinda funny, I overheard two doctors talking about me in the hallway (really nice things), and I had to awkwardly be like “Oh, um hi! I’m right behind you.”

To me, speaking is an art form and I’ve fallen in love with it, and I can’t wait to continue developing this talk and sharing these messages in more places.

From there, I traveled to Washington, D.C. for Project Sleep’s Congressional Briefing and Hill Day co-hosted with the Sleep Research Society (SRS). I felt ready for this advocacy day and the activities went super well.  I believe we are doing unique and important work advocating specifically for sleep health and sleep disorders research and awareness. Read the full re-cap on Project Sleep’s blog.

While in DC, I got to meet some very special people, including Project Sleep’s newest Board Member, Anne Taylor and Project Sleep’s 2017 Jack & Julie Narcolepsy Scholarship recipient, Cassandra Stewart. I also had some important meetings that will likely mean exciting things for Project Sleep in the years to come. I can’t wait to share more, all in good time.

I know this might seem strange, but I truly feel like I’m becoming a new and better version of myself. This aura of calm confidence washed over this past month and I feel like I am operating from a higher place within me. (I cannot describe this perfectly but that’s my best try.)

I cannot thank each of you enough for your support along this path. I hope I can continue to make you proud and elevate our voices …

Celebrating 10 years of the REM Runner Blog!

Originally at: http://julieflygare.com/celebrating-10-years-of-the-rem-runner-blog/

10 years ago today, I came out as a person with narcolepsy. On November 10, 2009, I started this REM Runner blog, disclosing on the internet for the first time that: “I’m Julie Flygare, a person living with narcolepsy with cataplexy.” 

From my original About Me: 

“Narcolepsy has changed my life for better and worse. I am proud to be a person with narcolepsy, yet I hope to build a brighter future for this serious chronic illness… On this blog, I will share some of my experiences as a person with narcolepsy, and as a runner, yogi, and photographer. In doing so, I hope to shed some light on narcolepsy, a little known and often misunderstood condition.”

Feels like yesterday? Nope.

I wish I could say “it feels like yesterday,” but honestly, it feels like a lifetime ago. My drive and mission remains the same, but this past decade has been a tremendous period of growth for me, the lowest of lows and highest of highs. Some of the lows I’ve shared here, like losing my dad and the nutty rollercoaster of publishing my book, others I’ve kept private.

At the same time, I ran three marathons, published Wide Awake and Dreaming: A Memoir of Narcolepsy, created the Narcolepsy: Not Alone campaign, founded Project Sleep, moved across the country, co-founded the Jack & Julie Narcolepsy Scholarship, worked full-time in the cancer non-profit space, fell in-love with speaking, and eventually took on my dream job of running Project Sleep

My blog is OLDER than Instagram.

When I started this blog, it was an important platform for me to share candid stories about living with type 1 narcolepsy with cataplexy. At the time, blogs were fairly new and Instagram didn’t even exist (IG launched the following year, on Oct. 6, 2010).

Today, I don’t publish here as much as I’d like. I have dozens of half-written posts and ideas listed in notebooks. When I prioritize my time so carefully, blogging often gets cut. At some point, I started to over-think each post. Meanwhile, Instagram snuck into my life, and became the place where I quickly published candid stories and thoughts and seemingly reached my community easily that way. 

What hasn’t changed… Your Love and Support!

Preparing for this post, I searched old emails and was reminded that I didn’t come up with title “REM Runner.” I’d emailed a few close friends these ideas: “The Dream Run” and “The Dream Jogger.” My best friend, Julie Glazer Scher responded, suggesting “REM Runner.”

To this day, Julie has been a passionate and dedicated supporter. From titling this …

Listen Now: Social Experience of Narcolepsy on Sleep Junkies Podcast

Originally at: http://julieflygare.com/listen-now-social-experience-of-narcolepsy-on-sleep-junkies-podcast/

“I remember keeping [my narcolepsy] private and always feeling like it was this thing sitting at the back of my throat that I wanted to share, but just stopping myself, remembering ‘you’ll get a bad reaction, this person won’t understand.’”   – Julie Flygare, Sleep Junkies podcast

 “So you went from something being a secret to the outside world, and then you kind of switched on the turbo, started a blog, wrote your book, and then to Project Sleep… From one extreme to the other and there seems to be no stopping what you’re doing.”    – Jeff Mann, Sleep Junkies

I was honored to be interviewed recently for the Sleep Junkies podcast – listen here! Please share this with friends to inform your community on what it’s REALLY like to live with narcolepsy. The psychosocial impact, stigma and undue jokes are a huge part of living with narcolepsy, yet under-discussed.

033: Narcolepsy: the social experience – Julie Flygare

Thank you, Sleep Junkies and Jeff Mann for inviting me to share my experience and Project Sleep’s efforts to build a brighter future. I’ve enjoyed getting to know Jeff over the past year, he published this neat article about my efforts last year. 

from Blog – Julie Flygare http://julieflygare.com/listen-now-social-experience-of-narcolepsy-on-sleep-junkies-podcast/…