Our Leadership

Meet our Board of Directors

Julie Scher, J.D.

Chair

Tracy Christensen

Secretary

Anne Taylor, RN, BSN

Director

Edward Sweet

Treasurer

Kylee Keskerian

Director

Cienna Ditri

Director

Meet our President & CEO

Julie Flygare, J.D. is an internationally recognized patient-perspective leader, an accomplished advocate, and the award-winning author of Wide Awake and Dreaming: A Memoir of Narcolepsy

Since receiving a diagnosis of narcolepsy with cataplexy in 2007, Flygare advanced her leadership in the sleep and healthcare space through speaking engagements, publications, earned media, collaborations, and advocacy and awareness initiatives. Prior to accepting this role, Flygare served as President of Project Sleep’s Board of Directors, while also gaining invaluable experience in marketing and philanthropy at the Pancreatic Cancer Action Network and City of Hope. Additionally, she served on the National Institutes of Health’s Sleep Disorders Research Advisory Board from 2012 – 2015. Flygare received her B.A. from Brown University in 2005 and her J.D. from Boston College Law School in 2009, focusing on health law, policy, and rare disease drug development.

Latest News

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…

New Narcolepsy Story: Meet Kristyn

This week, our Rising Voices of Narcolepsy Story Sharing live series continues with a new storyteller: Kristyn Beecher! On Sunday, November 22nd at 8:00 p.m. ET, Kristyn will share her narcolepsy story. Afterwards, we’ll host a live viewer Q&A. To join us live, simply head to Project Sleep’s Facebook page at 8pm (ET) this Sunday!…

Thank You from College! 2020 Scholarship Recipient Updates

This year, generous donors joined with Project Sleep to award a record 27 Jack & Julie Narcolepsy Scholarships to college-bound students exemplifying courage and resilience while living with narcolepsy or idiopathic hypersomnia. We caught up with the awardees to hear how college is going and what this scholarship meant to them. “I feel valued and…

POSTPONED: New Narcolepsy Story: Meet Kristen

POSTPONED: Kristen’s Story Sharing Session (originally scheduled for tonight, Sunday, Nov. 8th at 8pm ET) is postponed due to Tropical Storm Eta hitting South Florida today. Please stay safe Kristen and all our friends in South Florida. We will let you know the re-scheduled date for Kristen’s live broadcast soon! This week, our Rising Voices…

Narcolepsy in 2020: World Narcolepsy Day Expert Panel

In Project Sleep’s feature event for World Narcolepsy Day 2020, a panel of leading narcolepsy clinicians and researchers spoke to our President & CEO, Julie Flygare about  narcolepsy research progress and novel drug development underway. The panel, which represented five continents around the world, also addressed the challenges and barriers in providing care to people with…
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