Sleep Advocacy & Narcolepsy Awareness in Washington DC

by julie on March 5, 2019

“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 of that delivered me to this past week – an unforgettable trip to our Nation’s Capital.

Visiting FDA to Discuss People-Centered Language 

On Monday, Feb. 24, I spent the afternoon at FDA sharing about Project Sleep’s efforts to bring people-centered language recommendations to the sleep and narcolepsy research and drug development space. I really enjoyed our discussion and am so grateful for FDA’s thoughtful, caring and dedicated staff. 

Probably my biggest takeaway/reminder from this experience: culture change is a process and shifts take time. Some people (like these amazing FDA staff) are open to learning about the social science research and brainstorming ways to incorporate these findings into their work and communications! Progress, not perfection. 

I was honored to have this opportunity to help facilitate this discussion. I don’t pretend to have all the solutions but I love learning and I love sharing what I’ve learned. And what I’ve learned is: Words Matter. (Images matter too, probably even more, but I suppose that’s a topic for another day.)

On Capitol Hill to Advocate for Sleep and Sleep Disorders 

On Tuesday, Feb. 25, Project Sleep co-hosted an Advocacy Day with the Sleep Research Society. As part of our broader strategy and ongoing efforts, a small group of us took on Capitol Hill to advocate for sleep and sleep disorders research and awareness, specifically aiming to help ensure sleep-related funding at NIH, DoD and CDC.

We spent the day running from meeting to meeting (stopping for key photos, of course). We shared our personal stories and our passion for the importance of scientific advancement for people with sleep disorders, translational research, and public and professional sleep health awareness.

This is the third year of PS and SRS’s official collaboration and it has been a dream. Working with SRS’ Advocacy Task Force, I’m thrilled to be helping to build a movement and a policy agenda that I truly believe in. Also, I feel lucky to foster connections between amazing patient advocates, researchers, clinicians and policy experts.  

Saying goodbye to our sleep advocates as their lyfts drove away, my eyes welled with tears. To call this part of my job?! It’s truly surreal.

Advocacy is a LOT more than a fancy photo on the steps of the Capitol; it is built step-by-step with hard work behind the scenes to push progress forward. Read more and sign up for Project Sleep’s e-updates to get involved in future advocacy efforts.

At Walter Reed to Raise Narcolepsy Awareness

On Wednesday Feb 26, I was extremely honored to speak at Walter Reed National Military Medical Center — sharing my inspiring and educational narcolepsy presentation back-to-back in two presentations (a first for me). My audiences were the sleep team and then the psychiatry residents. 

I loved meeting the Walter Reed sleep experts, touring their facilities and learning more about their work helping members of the military and their families with sleep-related issues and conditions. Huge thanks to Dr. Jacob Collen and the sleep team for welcoming me so enthusiastically to share my first-hand patient perspective and for all you do for people daily. 

“But You Didn’t Stop”

Arriving at Regan Airport on Thursday for my flight home to Los Angeles, I ducked into the little gift shop on the lower concourse as I usually do. It was here, ten years ago, where I first read Mary Oliver’s The Journey. At the time, in May 2009, I’d been in DC to attend NORD’s conference, having skipped out on our law school graduation week parties to instead talk rare disease drug development.

Visiting DC in May 2009

At the time, I didn’t know that I’d move to DC a few months later, but I knew I was at a crossroads, as I’d recently decided to skip the BAR exam and begin writing a book. This poem was my permission slip to pursue my life’s work.

Waiting for my flight on Thursday, my body ached and my “spoons” were long gone, but my spirit was soaring. 

Thank you for your support and love through it all. Many challenges remain but I truly feel that I am where I am supposed, doing the work I was meant to do. Working for this cause is the honor of my lifetime and I am cherishing this journey, moment-by-moment. Here’s to another transformational decade ahead! 

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