2023 Sleep Advocacy Forum Focuses on Sleep Equity and Public Health

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On Monday Nov 13, 2023, Project Sleep facilitated the fourth annual Sleep Advocacy Forum in Washington, DC. This in-person event brought together a diverse group of policy makers and sleep community leaders to share updates and discuss areas of common interest.

Rising Voices Story Sharing from Kristyn Beecher

News producer, Rising Voices speaker, and Project Sleep Board Member, Kristyn Beecher, kicked off the event by sharing her journey of living with challenging symptoms for many years before finding a narcolepsy diagnosis at age 24.  Kristyn emphasized the importance of finding social support and community as an important part of her experience since her diagnosis.

There’s not a medication, a sleep hygiene regimen, or something that a doctor could have given me that I think would have changed my life or helped my narcolepsy the way that social support has.”

– Kristyn Beecher, Rising Voices speaker and Project Sleep Board Member

Sleep Equity Research & Policy

Next, Drs. Michael Grandner, PhD MTR, Director, Sleep and Health Research Program, University of Arizona, Marishka Brown, Director of NIH’s National Center on Sleep Disorder Research (NCSDR), and Arielle Gillman, Program Officer, National Institute of Minority Health and Health Disparities, delivered their respective research on sleep equity and public health. 

Dr. Marishka Brown highlighted the magnitude of this research, stating “Sleep is not just important. Important things are negotiable. Sleep is non-negotiable.”

Dr. Robert Turner, Assistant Professor of Clinical Research and Leadership at George Washington University and Julia Sauriol, B.S., highlighted findings from sleep equity research conducted in partnership with Project Sleep and Dr. Grandner.

The study team conducted a series of Black American Sleep Focus Groups. During these focus groups, Black Americans living with sleep disorders and their family members shared first-hand perspectives on sleep and sleep disorders. The aim of this research is to reduce delays to diagnosis and treatment of sleep disorders in Black American communities.

To finish out the morning, the National Health Council Senior Director for Health Equity, Karen Mancera-Cuevas, and Program Officer for the CDC National Center for Chronic Disease Prevention and Health Promotion, Dr. Natasha Buchanan-Lunsford, gave their insights on health equity, public health, and policy.

Inaugural Sleep Advocacy Champion Award

In the afternoon, Project Sleep was thrilled to present the inaugural Sleep Advocacy Champion Award. Starting in 2023, this award will annually recognize an individual who has worked to elevate the voice of sleep through federal and grassroots advocacy and public discourse.

This first-time award was given to Matthew Horsnell, a Project Sleep Rising Voices speaker, Wake Up Narcolepsy small groups facilitator, and incredibly dedicated sleep advocate. Sleep Advocacy Champions are trailblazers and community leaders who lead by example and embody Project Sleep’s commitment to making progress for sleep health, sleep equity, and sleep disorders.

Julie Flygare, President & CEO of Project Sleep, remarked how choosing just one advocate should have been a hard job, however, the choice was clear. “Matt has been very successful and impactful in leading grassroots advocacy efforts and bringing people to our cause. His voice has been powerful in sharing his story everywhere from FDA to Capitol Hill and far beyond DC as well,” she proudly stated.

In 2020 I met my best friend and partner, Heather. She encouraged me to step into advocacy fully. By doing so she reinforced an important lesson: surround yourself with people who encourage you to dream big. I’m here because she believed in me.”

– Matt Horsnell, Inaugural Sleep Advocacy Champion Awardee

Washington Update & Stakeholder Organization Updates

Lindsay Scola, an entertainment impact strategist and Project Sleep Rising Voices speaker, shared a huge update to the following day’s advocacy agenda. In addition to the annual Hill Day, the morning would also include a meeting with the White House!

On Tuesday, Nov. 14, 2023, Project Sleep and additional sleep organization leaders met with important White House staff to discuss sleep equity. This monumental and first-of-its-kind meeting was made possible by Lindsay for Project Sleep and the sleep community.

To close out the forum, patient advocacy organizations and professional societies in attendance shared about their organizations, their missions, exciting updates, and their work in sleep equity.

Congressional Participants:

  • Hannah King, Senior Legislative Assistant
  • Congressman Dr. Andy Harris, Representing the 1st District of Maryland
  • Congresswoman Zoe Lofgren, Representing the 18th District of California & Chair of the Congressional Sleep Health Caucus
  • Senator Cindy Hyde Smith, Representing Mississippi and a Member of the Appropriations Committee

Special Thanks to the Dream Team

A huge thank you to all those who made the 2023 Sleep Advocacy Forum such a wonderful meeting! Special thanks to our sponsors who made this event possible, including:  Jazz Pharmaceuticals, Harmony Biosciences, Takeda, Avadel, Centessa Pharmaceuticals, Alkermes, and Zevra Therapeutics

2023 Sleep Advocacy Forum Photos:

Learn More

While this year’s Sleep Advocacy Forum aimed to foster in-person connections, the 2020 and 2021 Sleep Advocacy Forums were virtual, with extensive video content available online to watch.

What’s next?

On Tuesday, Nov. 14th, 2023, Project Sleep partnered with the White House Office of Public Engagement to host a Sleep Equity Convening. This meeting was the first-of-its-kind on sleep with the White House. Read about the White House Sleep Equity Convening.

Also on Tuesday Nov. 14th, representatives of advocacy organizations and professional societies educated Congressional offices on sleep across Capitol Hill. Read more

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