S1E2: Advocacy Series: Lifting the Silence: Sleep Disorders Advocacy with Claire Wylds-Wright

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In this powerful episode of the Narcolepsy Navigators Podcast, hosts Kerly and Liz kick off a new advocacy-focused series spotlighting changemakers in the sleep disorder community.

They’re joined by Claire Wylds Wright, a UK-based advocate whose journey into advocacy began when her daughter was diagnosed with narcolepsy at a young age. What started as a search for answers quickly evolved into a mission to create change—leading Claire to become an author, mentor, and co-founder of the Sleep Consortium.

Claire shares what it really takes to advocate within healthcare systems, why listening is one of the most powerful tools in medicine, and how collaboration is shaping the future of sleep disorder research and treatment. The conversation also tackles misconceptions, healthcare disparities, and what upcoming treatments could mean for families worldwide.

This episode is a must-listen for advocates, caregivers, clinicians, and anyone passionate about better sleep health outcomes.

What You’ll Learn in This Episode:

• How advocacy often begins at the diagnosis stage
• Why patient voices matter in healthcare decision-making
• The mission behind the Sleep Consortium
• Differences between UK and US healthcare systems
• Racial disparities in sleep disorder diagnosis and care
• The future of narcolepsy and hypersomnia treatments
• Advice for new advocates entering the space

🎧 Listen now and join the movement shaping the future of sleep health.

Bio:

Claire is an award-winning author and patient advocate for people living with sleep disorders. After her daughter Mathilda developed Type1 Narcolepsy in 2010, her family moved from England to California to secure treatment and expert care for Mathilda under Professor Emmanuel Mignot at Stanford. Her book Waking Mathilda—A Memoir of Childhood Narcolepsy was published in 2017 and tells the story of parenting a young child with Narcolepsy and the impact of Mathilda’s diagnosis on her life and her family. She lives in Los Angeles with her son, daughter, and cat Mochi.

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***If you find these symptoms relatable, please seek medical advice.***