Sleep Advocacy Forum Rallies Leaders & Community

This fall, Project Sleep was honored to facilitate the inaugural Sleep Advocacy Forum virtually on Oct 5-6, 2020. This new event brought together a powerful group of key leaders and sleep advocates to learn from each other and to maximize our collective impact in the policy space.

On Monday, Oct. 5, the Sleep Advocacy Forum‘s educational sessions covered an array of healthcare topics important to the sleep, circadian, and sleep disorders communities. We heard timely updates on recent challenges and emerging opportunities in medical research, treatment development, public health, and patient care from leading policy experts and organizations. See the full agenda.

We are thrilled to share some highlight videos below and on YouTube, please watch and share!

Congressional Update: Congressman Adam Schiff

You know the power of your voice, the power of your voices together, and the power of your community to make the change we all demand.”

— Congressman Adam Schiff

Congressman Adam Schiff is currently in his 10^th term representing California’s 28^th District, which includes part of Los Angeles County. He is also a strong champion for sleep and sleep disorders on Capitol Hill, including leading the sleep community’s annual appropriations letter. In his special welcoming address, Congressman Schiff provides an update on congressional work to the sleep community.

NINDS 2020 Update: Dr. Walter Koroshetz, NINDS Director, and Dr. Janet He

The sleep research NINDS funds is a balance of both basic research, translational research, all the way to clinical research.”

— Dr. Janet He

Walter J. Koroshetz, MD, is the Director of the National Institute of Neurological Disorders and Stroke (NINDS). Janet He, PhD, is a Program Director in the Systems and Cognitive Neuroscience cluster at NINDS. NINDS is an Institute within NIH that aims to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease.

NHLBI 2020 Update: Dr. Jim Kiley, NHLBI Division Director

Sleep is so cross-cutting, that it impacts almost every single organ system, all bodily systems, but also society as a whole.”

— Dr. James Kiley

James Kiley, PhD, serves as the Director of the Division of Lung Diseases at the National Heart, Lung, and Blood Institute (NHLBI) at NIH. NHLBI houses the National Center on Sleep Disorders Research and Dr. Kiley oversees those activities as well as serving as the Director of the Division of Lung Diseases.

PCORI 2020 Update: Dr. Thuy-Vy Do, PCORI Program Officer

Our research is guided by patients, caregivers, and the broader healthcare community.”

— Dr. Thuy-Vy Do

Thuy-Vy Do, PhD is a Program Officer for the Clinical Effectiveness and Decision Science program at the Patient-Centered Outcomes Research Institute (PCORI). In this role, she oversees a number of large-scale clinical trials focused on a range of conditions, including sleep disorders. PCORI is a newer research funding entity with a growing interest and portfolio in patient-centered sleep disorders research.

Sleep, Race, and Health Disparities: Dr. Michael Grandner, University of Arizona

If we’re going to make an impact on sleep in the real world and in public health, we have to understand what’s upstream.”

— Dr. Michael Grandner

Dr. Michael Grandner is a licensed clinical psychologist, Director of the Sleep and Heath Research Program at the University of Arizona, and Director of the Behavioral Sleep Medicine Clinic at the Banner-University Medical Center in Tucson, AZ. He studies not only what happens to our health when we do not get enough sleep, but also how and why people sleep the way they do and real-world solutions for sleep problems.

Sleep, Race, and Health Disparities Panel: Dr. Carmela Alcántara, Columbia University

I’m really interested in how social determinants shape sleep, mental health, and cardiovascular health, but also thinking—how do we translate that into interventions?”

— Dr. Carmela Alcántara

Dr. Carmela Alcántara is an Associate Professor of Social Work at Columbia School of Social Work. She received a BA in Psychology and Sociology from Cornell University, a PhD in Clinical Psychology from the University of Michigan, and completed a postdoctoral fellowship at the Harvard T.C. Chan School of Public Health. She also completed her clinical internship at Bellevue Hospital Center at New York University Langone Medical Center. She is a clinical psychological scientist with additional expertise in social epidemiology and behavioral medicine.

Patient Story: Kristyn Beecher, Rising Voices of Narcolepsy Speaker & News Producer

Why can’t I care enough about something to stay awake?”

— Kristyn Beecher

Kristyn Beecher is a news producer and content creator from Houston Texas. She was diagnosed with narcolepsy at age 24, but had lived with symptoms for many years before that. As a speaker with Project Sleep’s Rising Voices of Narcolepsy program she tells her own story for the first time and hopes to let others living with narcolepsy know they aren’t alone.

FDA 2020 Update: Dr. Theresa Mullin, FDA, CDER Associate Director for Strategic Initiatives

Patients with chronic conditions are actually experts in what it’s like to live with that condition.”

— Dr. Theresa Mullin

Theresa M Mullin, PhD is the CDER Associate Center Director for Strategic Initiatives. She oversees areas of strategic interest to the Center and external stakeholders, leading a variety of CDER efforts including Patient-Focused Drug Development (PFDD), and the Rare Disease Cures Accelerator.

On Tuesday, Oct. 6, 2020, Project Sleep hosted the Sleep Advocacy Forum’s Executive Session with key leaders of sleep-related professional societies and patient advocacy organizations to discuss key community priorities. Participating organizations included:

Professional Societies:

American Academy of Sleep Medicine
American Lung Association
American Thoracic Society
Sleep Research Society
Society for Research on Biological Rhythms

Advocacy Organizations:

Many Thanks!

Huge thanks to this year’s speakers and participating individuals and organizations. We are so encouraged by the growing momentum in the sleep advocacy space!

Special thanks to Avadel Pharmaceuticals, Jazz Pharmaceuticals, Harmony Biosciences, and Takeda Pharmaceuticals for generously supporting the inaugural Sleep Advocacy Forum. Likewise, thank you to our colleagues at the Health and Medicine Council for their professional guidance and policy expertise. We cannot wait for next year’s event already!

Get Involved in Sleep Advocacy

With a new Congress starting in January 2021, there will be exciting new advocacy opportunities in early 2021. You can take part and make a huge impact from your home. To receive time-sensitive “Action Alerts” with simple instructions to take action quickly, sign up for e-updates here.