Julie Flygare Speaks at APSS Sleep 2022

On June 6, 2022, Project Sleep’s President & CEO, Julie Flygare, JD, spoke on an expert panel at a CME event at APSS SLEEP 2022 in Charlotte, NC. The symposium, “Achieving Optimal Outcomes in Patients with Narcolepsy: Aligning Treatment Goals with Patients” was one of the first CME symposiums to feature a person living with a sleep disorder alongside clinicians at a major sleep-related meeting. The event was held by CME Outfitters with support from Jazz Pharmaceuticals.

Flygare shared a powerful analogy for clinicians:

Imagine going to be medical school without knowing any other medical students, without knowing any doctors… What would that be like? Pretty isolating and challenging. That’s what it’s like to leave a doctor’s office and know no one else that shares this part of your identity that will be with you for the rest of your life.”

—Julie Flygare, JD

Watch & Share Video Highlights

Please watch and share these highlights and check out the full OnDemand virtual symposium video, featuring Dr. Richard Bogan, Dr. Michael Thorpy, Dr. Terri Weaver, and Julie Flygare.

Isolation & Connection

“I’d ask, “Do you know someone else living with narcolepsy?’ The answer is usually no.”

Julie’s Path to Therapy

“I lucked into getting the support I really needed… I’d like others to know they deserve support.”

Finding Social Support

“Hearing from other people living with narcolepsy really helped [my dad].”

Invisible Narcolepsy Symptoms

“Even though I was years into sleepiness, people didn’t really see it.”

Patient Organizations

“[Patient advocacy organizations] are a real lifeline for people.”

Disrupted Sleep

“Before my diagnosis, I never thought I was disrupted at night.”

Patient Inclusion at APSS Sleep 2022

“I hope this is just the beginning of a movement to elevate more patient voices in important venues,” said Flygare, “Because many people living with sleep disorders have incredible insights to share with clinical and research communities. By bringing diverse perspectives to the table together, we will make more meaningful improvements in the lives of the 40-60 million Americans facing chronic sleep conditions.”

All of us at Project Sleep are thrilled to be part of the momentum toward greater patient representation and inclusion in the sleep field. Check out Project Sleep’s Rising Voices patient speaker training program and other key efforts to bring patient voices to the APSS SLEEP 2022.

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