Narcolepsy Book
Listen Now: CALM + COZY podcast interview
Apparently I felt comfortable and a bit snarky on the day that I recorded this CALM + COZY podcast interview with the amazing host, Beth Wyatt (@sleepcoachbeth on IG), because I’m pretty honest and animated here! Beth asked great questions that led to unique conversations not part of my usual “talking points” repertoire. My favorite discussion…
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 More5 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…
Read More2018: My Year in Review
2018 was a year unlike any other. I invested in a few new suitcases, which helped me get around easier since I don’t think I’ve ever traveled so much in one year. Here are some highlights, challenges, favorite reads, lessons learned and dreams for the new year! Highlights of 2018: Taking the leap to become the…
Read MoreRepresenting Narcolepsy in Suffering the Silence Video & Photo Shoot
Hollywood’s portrayals of narcolepsy are notoriously inaccurate. For one day, the script was different, thanks to Suffering the Silence, AwesomenessTV and Visible. I was so proud to represent narcolepsy in this cool new video! Watch Video: Hello Hollywood! The morning of the Suffering the Silence filming and photo shoot, I arrived at the fancy AwesomenessTV studio in…
Read MoreWords Matter: At The Crossroads Of Innovation And Dignity
Life Science Leader magazine recently published one of my most honest opinion pieces, “Words Matter: At The Crossroads Of Innovation And Dignity.” In this article, I highlight a tension between patient-centered language (that prioritizes neutral language to respect variation and individual autonomy) versus drug development language (that may lean toward hyperbole or negativity to help establish urgent unmet needs). …
Read MoreWATCH NOW: “Translating the Patient Story into Action”
Interested in raising awareness but not sure how to start? This awesome webinar, “Translating the Patient Story into Action” is the perfect place to start! Hosted by the Society for Participatory Medicine, this webinar features a few different perspectives on raising your voice in the healthcare space. I was honored to be included and really…
Read MoreSpeaking in Bronxville, New York this Wednesday
I’m home from Australia today, but heading off to New York tomorrow, because I couldn’t pass up this amazing opportunity to be a keynote speaker during Sarah Lawrence’s Sleep Week. New York friends: Please join me this Wednesday 10/17 from 6-8 pm ET at Sarah Lawrence College in Bronxville, NY! I’ll share my inspiring personal…
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