“I’ll Never Forget Narcolepsy Now.” -UCLA Medical Student

by julie on December 5, 2016

This fall, I was BUSY spreading narcolepsy awareness to doctors, medical students and researchers across the country.

14463034_1069548206495778_4613870112359712414_n 14440998_1069548199829112_3858943320131615301_n

Upon returning from Italy, I started back at my full-time job in pancreatic cancer advocacy first thing the next morning. The following evening, I traveled to UCLA Medical School to give my narcolepsy presentation for first-year medical students as part of their Home Visits Program. This is my third year participating in this program and one of my favorite things I do every year.

14441189_1072805832836682_1870179596597600642_n 14485153_1072806249503307_7573037571504974091_n

That Saturday, I traveled to Anaheim, CA to speak at the California Sleep Society Symposium. This awesome event brought together sleep clinicians, researchers and technologists from across California. I was the only patient speaker at the two-day conference. After my presentation, one doctor told me:

“I’ve been diagnosing and treating patients with narcolepsy since the 1970’s and this was one of THE BEST presentations on narcolepsy I’ve ever seen.”

15073345_1115274855256446_5132575224578665903_n
It was great to catch up with Dr. Emmanuel Mignot. This was our second Saturday in a row speaking at the same conferences – from Italy to Disneyland in one week!

img_6342

A huge highlight of this meeting was meeting Dr. Bill Dement. I’ve followed Dr. Dements work and awareness efforts closely, and seeing him in the audience as I spoke was exciting and nerve-wracking.

Afterward, I got to meet the man himself! He signed a copy of his book for me and I signed a copy of my book for him. It was one of the COOLEST moments that I’ll cherish forever.

img_6343The following week, I traveled to Washington DC to represent Project Sleep in the first SLEEP-2 meeting.  I was thrilled to provide the opening keynote for the meeting, detailing why patient-focused outcomes research is such an important topic and providing examples of efforts I’ve been involved in and future opportunities.

14570417_1078282015622397_2649075607903245961_nPCORI Executive Director Joe Selby spoke after me and kept referring back to my speech in his. After the meeting, he tweeted:

14601000_1078282445622354_3572759891150576480_n

In addition, Rebecca Fuoco, MPH, gave a powerful presentation on patient-centered communications tactics. It was a fantastic event that makes me hopeful for the future of sleep research and medicine – read re-cap here.

A few weeks later, I returned to UCLA Medical school to present to another group of first-year medical students. It was probably my favorite audience yet, they were super lively and fun. One of the students approached me afterward to say:

“I’ll never forget narcolepsy now.”

14900465_1102966679820597_8714110335503813821_n

Wow. You might think it gets old presenting so many times, but watching people’s hearts and minds literally open to narcolepsy in my presence is simply the coolest and I’m forever grateful for the opportunities I’ve received!

This week, I’ll return to UCLA medical school on Thursday to present to one more group of first-year medical students. Looking forward to this!

Want to become a narcolepsy advocate?

screen-shot-2016-08-07-at-3-39-41-pm

Project Sleep’s Rising Voices of Narcolepsy leadership program starts in spring 2017 to help people with narcolepsy effectively tell their story as speakers and writers.

Learn more and sign up for more information.

{ 1 comment… read it below or add one }

Gail Pean December 5, 2016 at 9:43 pm

Congratulations Julie! I am so proud of the work you have done including your book! You are a role model for all patients to speak up for their rights and needs.
Have a very happy holiday season!

Reply

Cancel reply

Leave a Comment

Previous post:

Next post: