Project Sleep Brings Patient Voices to White House Listening Session

Exciting news! On Dec 8, 2023, Project Sleep participated in a White House virtual Listening Session on Burden Reduction. This session focused on decreasing burdens individuals and families face when accessing government benefits and services.

Members of the Office of Public Engagement, Office of Management and Budget, and the White House Domestic Policy Council listened as people with diverse disabilities described challenges in applying for and maintaining needed benefits and services, as well as ideas for addressing these challenges.

Representing Sleep at the Burden Reduction Listening Session

Project Sleep was honored to represent the sleep disorder community. Lauren Oglesby, MPH, Programs Manager at Project Sleep, represented the organization alongside Mary Schneider, a Rising Voices speaker from Philadelphia living with type 1 narcolepsy with cataplexy. Mary shared her experiences applying for Social Security Disability Insurance, emphasizing the challenges of documenting the full extent of narcolepsy’s impact on her ability to work.

“I spend so much of my daily life trying to help people around me understand how debilitating my narcolepsy symptoms actually are,” Mary told the policymakers in attendance. “Applying for SSDI magnifies and intensifies that stress, because I have to provide ironclad proof of the cognitive and neurological impacts I experience as a person with narcolepsy. I cannot overstate how challenging it is to quantify or prove disability on paper when your disability is invisible.”

Project Sleep also gathered and shared community members’ written responses to questions sent in advance of the listening session. “Issues such as the ‘time tax,’ additional stress, stigma, and other costs of accessing benefits and services deeply affect many people with sleep disorders and their families,” says Lauren. “We are grateful to all those in Washington who welcome the voices of our community and work to reduce these burdens.”

I cannot overstate how challenging it is to quantify or prove disability on paper when your disability is invisible.

Mary Schneider, Rising Voices Speaker

Huge thanks to Mary and all those who contributed their insights to share with these important White House representatives! Learn more about the Office of Information and Regulatory Affairs Burden Reduction Initiative here.

More Sleep Advocacy Updates

On Monday Nov. 13, 2023, Project Sleep welcomed leaders of various patient advocacy organizations and professional societies to Washington, DC for the 4th annual Sleep Advocacy Forum. Read about the 2023 Sleep Advocacy Forum.

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 at the White House. Read about the White House Sleep Equity Convening.

After the White House meeting, sleep community leaders headed to Capitol Hill to advocate with key Congressional offices to promote important sleep research and sleep public health priorities. Read about our meetings with Congressional policymakers.

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