Am I a TYPICAL person with narcolepsy?

Originally at: http://julieflygare.com/am-i-a-typical-person-with-narcolepsy/

“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. 💗

from Blog – Julie Flygare http://julieflygare.com/am-i-a-typical-person-with-narcolepsy/…

Ready for Awareness? World Narcolepsy Day 2020 is one month away!

Originally at: http://julieflygare.com/ready-for-awareness-world-narcolepsy-day-2020-is-one-month-away/

Less than one month until World Narcolepsy Day on Sept. 22, 2020, and I cannot wait for this second annual day dedicated to raising narcolepsy awareness on a global scale. World Narcolepsy Day 2020 is co-led by 26 non-profit patient advocacy organizations on six continents around the world. See all the orgs listed here.

Last year,  you raised narcolepsy awareness from Finland to Australia, Kenya to Argentina, Canada to Japan, and many places in between!

World Narcolepsy Day 2020

Of course, 2020 hasn’t been the year anyone expected, and in-person events are unlikely. However, in a year marked by isolation and calls for social justice —the importance of fostering community and celebrating our diverse international community is more important than ever.

Take Action Today! 

First things first, the two things I’d ask you to do today are:

  1. Order your official Project Sleep World Narcolepsy Day t-shirts by Sept. 5th to get your shirt by Sept. 22nd in the USA.
  2. Participate in our new CLOUD campaign sharing your message and taking photos for socials! (Don’t forget to use the hashtag #WorldNarcolepsyDay and tag: @project_sleep in posts so we can see and re-share.)

 

New Awareness Tools

In addition, Project Sleep has new infographics, Spanish-language resources and a Facebook profile frame. Soon we will unveil our schedule of (online) activities for September leading up to World Narcolepsy Day on Tuesday, Sept. 22nd. Check out our webpage and stay tuned for announcements!

Use New Narcolepsy Gifs on your FB and IG Stories!

We developed some awesome new narcolepsy gifs that you can use on your Instagram and Facebook stories. Fun example with Watson, Dr. Mignot’s dog with narcolepsy:

Behind-the-scenes

Thank you to the 26 organizations around the world co-leading this day alongside Project Sleep. Each will celebrate World Narcolepsy Day and we cannot wait to cheer for their efforts too!

A huge thank you to Project Sleep’s World Narcolepsy Day 2020 volunteer committee for developing and implementing our organization’s communications plan. This has been a “dream team” effort and I’m so so grateful to everyone who is giving precious time, energy and spoons to raise awareness. I truly believe that together, we are building a brighter future!

from Blog – Julie Flygare http://julieflygare.com/ready-for-awareness-world-narcolepsy-day-2020-is-one-month-away/…

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 …