Advocacy

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 […]

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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: Prescribing social support to people with narcolepsy, Partnering with patients, patient leaders and organizations to develop patient-centered research toward recognizing and addressing stigma. I’d spent […]

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“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 […]

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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 […]

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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 […]

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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 […]

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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 […]

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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 […]

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“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 […]

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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 […]

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