Parents of PWNs (Persons with Narcolepsy)

Hosted By
Tracy V.
Monday, Mar 11, 2024 | 08:15pm - 09:15pm EDT
18 seats remaining
About this meeting
Parents face many challenges when caring for a child with narcolepsy. No one understands better than another parent. Join us to discuss your challenges and celebrate your successes. Meetings will cover topics from selfcare, medication, school, relationships, work, driving, insurance, or anything that is on your mind.
  • Host

    Tracy V.

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  • Co-host

    Adam L.

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About the host
I learned 5 years ago that I was the parent of a Person with Narcolepsy (PWN). Since then, I have also learned all the things I did wrong as a parent in terms of truly understanding what my son (now 30) was going through. Lazy, addicted, combative etc ... are all terms I used to think about him and accused him of. Since then, I have made it my mission to better understand Narcolepsy and learn from PWN and medical professionals about their lived experiences and the state and future of treatment options for PWN. I've been coaching in various forms (corporately and privately) for 25 + years, and my goal now is to help other caregivers who are supporting their loved one with Narcolepsy to do so with increased knowledge and grace for their PWN and for themselves. I hope to create a safe space for caregivers to share their worries, frustrations and wisdom with a little humour along the way. I look forward to meeting you.
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Attendees (2)
Sarah R Aida Serrano
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Wake Up Narcolepsy

Wake Up Narcolepsy is a 501(c)(3) nonprofit organization dedicated to driving Narcolepsy awareness, education and research toward improved treatments and a cure.

WUN offers free, targeted online support groups to individuals with Narcolepsy and their families, worldwide. Our programs are designed to bring together individuals who have been affected by the diagnosis of Narcolepsy and provide the support and community necessary to thrive. Individuals with Idiopathic Hypersomnia welcome. 

WUN accepts donations to accelerate Narcolepsy reseach. Since inception in 2008, WUN has donated over $1.35 million in research funds to institutions across the US including Stanford University, Harvard, Boston Children's, Northwestern, Vanderbilt and more.

Thank you to our sponsors for making these groups possible: Jazz Pharmaceuticals, Avadel, Harmony BiosciencesTakeda.