Stanford Medicine X
Teaching Class at Stanford Medical School
Recently, I got to teach the Engage & Empower Me class at Stanford Medical School. I shared my story of narcolepsy and founding Project Sleep to make sleep cool, then the students conducted a design-thinking challenge on promoting healthy sleep habits for college students. The students came up with AWESOME project concepts. Also they taught…
Read MoreThe Magic of MedX 2016
On my birthday, I traveled to San Francisco to participate in my favorite conference, Stanford Medicine X 2016! On Thursday, Sept 15, I participated in two interesting workshops and then the full conference took place Friday Sept 16 – Sunday Sept 18. Although this was only my second year attending MedX, it felt like a…
Read MorePatient Advocates at Conferences Survey
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Read MoreA Monumental Day: Visiting the White House as a Narcolepsy Advocate
On June 2, 2016, I had the honor of attending the White House/Stanford Medicine X workshop, “Engaging Participants as Partners in Research”, as part of President Obama’s Precision Medicine Initiative. This event far exceeded my wildest expectations. But first, some context. It’s Gonna Be a Good Day: The day before going to the White House, on…
Read MoreRepresenting Narcolepsy at the White House
This week, I received a very special invitation from the WHITE HOUSE! I am so honored to share that on June 2, 2016, I will join the Medicine X and EveryoneIncluded™ family of rockstar advocates and innovators at the White House for an important discussion on patients as equal partners in research, a core goal of President Obama’s…
Read MoreWatch Now: Today’s Tiny Triumph – A Video by Everyone Included & MedX
In this Everyone Included™ video, I speak with MedX innovators about what is means to track or measure our health. Are all things measurable? How do we make sure that intangible and invisible things like puppies, pain, happiness, sleepiness and social support, are part of the story too? How do we shift the culture of healthcare from “I…
Read MoreWatch Now: New Video on Narcolepsy, Sleepiness & Invisible Illnesses
Recently, I was honored to join a group of rockstar advocates and innovators for a fantastic discussion and experimental filming exercise! Check out this awesome first video highlighting narcolepsy, sleepiness and invisible illnesses: When you get invited to an “experimental filming dinner party” in the Hollywood Hills where there’s no cellphone service, you may feel a little uncertain……
Read MorePodcast: A conversation about narcolepsy, Homer Simpson, memoir writing and marathon running.
Check out this fun podcast! I was so honored to be featured on “Just Talking Podcast” with Christopher Snider. I met Chris at MedX, he is the creator of mydiabetessecret.com and an incredible role model and ePatient leader who is shining a bright light on the power of the patient voice. It’s funny when someone you look…
Read More2015 Reflections & Dreams for 2016 – Homer Simpson, Koalas and Marathons, Oh My!
Scariest Moment of 2015: I gave 12 presentations in 2015, but by far the most intimidating was my 5-minute ignite talk at Stanford Medicine X. My legs trembled stepping on stage in front of this prestigious group of healthcare innovators. I’d prepared for months, but still totally blanked mid-speech, making for a dramatic pause…….. But I did it and I’m…
Read MoreWATCH NOW: MedX 2015 Ignite! Talk by Narcolepsy Advocate, Julie Flygare
I’m thrilled to share my 5-minute Ignite! Talk from Stanford Medicine X 2015. Please share with friends and family to raise narcolepsy awareness (https://youtu.be/MXTd8xd_f8s). In this video, I describe my journey with narcolepsy from people laughing in my face to living proudly and creating the NARCOLEPSY: NOT ALONE campaign. I emphasize how feeling “misunderstood and alone” with…
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