Sleep challenges are a real and often misunderstood part of life with Prader-Willi Syndrome. Many families spend years noticing changes, asking questions, and navigating uncertainty — often without clear answers or validation.

This webinar, Shedding Light on Sleep Disorders in Prader-Willi Syndrome, is designed to bring caregivers, advocates, and clinicians together for an open, experience-centered conversation about sleep in Prader-Willi Syndrome. This is not a traditional educational lecture. Instead, the discussion will center on honest caregiver storytelling, shared learning, and clinical insight that helps translate lived experience into understanding and action.

Caregivers will share what they observed, what felt confusing or was missed early on, and how sleep challenges affected daily life and family dynamics. Clinicians will provide context around what is currently known about sleep issues in PWS, reinforce that these challenges are real and medical, and help families understand what questions to ask and what support may be available. Families should leave this webinar feeling validated, better informed, and reminded that they are not alone.


Speakers:
Dr. Aaron Chidekel, Nemours Children's Hospital
Dr. Amee Revana, Texas Children's Hospital
Dorothea Lanz, PWSA | USA
Elaine Towle, PWSA | USA
Lynn Garrick, PWSA | USA

Who Should Attend: 

• Parents and caregivers of individuals with Prader-Willi Syndrome
• Adults with PWS and support staff
• Advocates and community members interested in sleep issues in PWS

For questions, please email [email protected]