Sleep Advocacy Steps Up! Reporting Back from Capitol Hill

On Nov. 19, 2019, Project Sleep and the Sleep Research Society hosted a Congressional Briefing and Advocacy Day bringing together the sleep community to urge Congress to support critical sleep research and awareness efforts.

The day kicked off with a Congressional Briefing in the Rayburn House Office Building—bringing together Members of Congress, staff members, renowned sleep researchers and patient advocacy leaders, and other community stakeholders.

Congressional Briefing

During the briefing, Ebony Lay, a telecommunications engineer and Rising Voices of Narcolepsy speaker from Kansas, shared her powerful story of going 28 years with symptoms before finding an accurate diagnosis of narcolepsy.

Next, two officials from the National Institutes of Health (NIH), Dr. Nina Schor and Dr. Jim Kiley, provided insights on recent advancements and emerging opportunities in sleep disorders research. Speakers at the briefing included:

  • Patrick Fuller, PhD, Chair of Advocacy Task Force, Sleep Research Society; Associate Professor of Neurology, Harvard Medical School
  • Julie Flygare, JD, President & CEO of Project Sleep
  • Ebony Lay, Rising Voices of Narcolepsy trained speaker
  • Dr. Nina Schor, National Institute of Neurological Disorders and Stroke
  • Dr. Jim Kiley, National Heart, Lung, and Blood Institute
Ebony Lay shares her story at briefing

Rallying the Sleep Community

Project Sleep and the Sleep Research Society proudly welcomed leaders from other major patient advocacy organizations and professional societies to participate in the day’s activities, including:

Rep. Jahana Hayes of CT's staff meets with Anne Taylor of Project Sleep, Tammy Smith of Wake Up Narcolepsy, Ann Gallagher of Start School Later & Scott Williams of AASM

Hill Day Activities

Following the briefing, sleep researchers and patient advocates conducted dozens of meetings with federal lawmakers in both the U.S. House of Representatives and the U.S. Senate. The sleep community educated lawmakers on the impact of sleep loss and sleep disorders, and advocated for sleep and sleep disorders research at the National Institutes of Health (NIH), the Veterans Administration, and the Department of Defense. Likewise, the sleep community urged Congress to re-invigorate vital public health initiatives focused on sleep at the Centers for Disease Control and Prevention (CDC).

Stay tuned! Our efforts were very timely, as Congress currently works to finalize the appropriations bill for fiscal 2020. We will report back as soon as there’s a final appropriations bill.

Project Sleep Patient Advocate, Cassandra Stewart meets with her Senator Joe Manchin

2019 Distinguished Public Service Award

While on Capitol Hill, the sleep community awarded the 2019 Distinguished Public Service Award  to Congressman Adam Schiff for his efforts as a champion for sleep research, public health activities and healthcare coverage and access for patients with pre-existing conditions and complex healthcare needs.

Congressman Schiff's Legislative Assistant, Anthony, accepts award from Sleep Community

Reflections from the Day:

“Seriously one of the coolest, most rewarding things I’ve ever done. Sharing my story was important to me so no one else goes 20 years without a diagnosis. It was an honor to be with other amazing patient advocates and great researchers. I won’t ever forget this day!”

Thaddeus Bath

Patient Advocate, Project Sleep

“I am extremely grateful to have had the opportunity to advocate for sleep research. Every aspect of my daughter’s life has been affected by narcolepsy, like many people with sleep disorders. Advocating to my Members of Congress is a dream that I wouldn’t have thought to dream. Yet a dream realized none the less.”

Tammy Smith

Board Member, Wake Up Narcolepsy

“While sleep and circadian scientists are making incredible breakthroughs to better understand sleep’s vital role, it’s critical that we ensure that these findings reach people and improve lives. Partnering with Project Sleep has helped the Sleep Research Society to take our efforts to the next level and fulfill our goal to enhance medical research and public health activities focused on sleep.”

Patrick Fuller, PhD

Chair of Advocacy Task Force, Sleep Research Society; Associate Professor of Neurology, Harvard Medical School

“About 50-70 million Americans live with sleep disorders, but the majority are currently undiagnosed, due, in part, to low awareness even among medical professionals. By teaming up with the Sleep Research Society and other renown sleep-related organizations, Project Sleep is proudly elevating patients’ voices to shed critical light on the serious nature of sleep and sleep disorders, something that might otherwise go overlooked.”

Julie Flygare, JD

President & CEO, Project Sleep

Special Thanks

A huge thank you to the Sleep Research Society for this collaboration over the past three years. Special thanks to the enthusiastic patient advocates, organizational leaders. and researchers who dedicated their time and energy to participate. We hope to continue building on this fantastic momentum!

Our Advocacy Day Photo Album:

Your Voice Matters

You do NOT need to be in Washington, D.C. to make a meaningful impact. Your support from across the country is absolutely essential to overcome the challenges facing the sleep community. Please sign up to receive timely “action alerts” at project-sleep.com/advocacy.

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