Narcolepsy Advocacy
It’s Almost World Narcolepsy Day, Are You Ready?
The week leading up to World Narcolepsy Day has quickly become one of the most surreal weeks of my life! I’m already speechless seeing the photos, articles, videos and radio segments from around the globe honoring World Narcolepsy Day. World Narcolepsy Day Activities: I will travel to Vancouver, Canada tomorrow to celebrate World Narcolepsy Day…
Read MoreListen: Julie Flygare on Present Not Perfect Podcast in honor of World Narcolepsy Day
Two people with narcolepsy. Double the insight! A few minutes into recording, I realized I’d never recorded a podcast with a fellow person with narcolepsy before. This interview with Leyla Sarper for the “Present Not Perfect” podcast was such a neat experience. I’m super excited to share this with you today! Listen now on Spotify here.…
Read MoreCelebrating 20 Years of Hypocretin/Orexin: Narcolepsy’s Big Breakthrough
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…
Read MoreListen 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…
Read MoreSeattle! 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…
Read MoreJoin 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…
Read MoreOur 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…
Read MoreSleep Advocacy & Narcolepsy Awareness in Washington DC
“One day you finally knew what you had to do, and began…” — Mary Oliver, The Journey Ten 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…
Read MoreCare 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…
Read MoreThe 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…
Read More