Meet Taylor, From Project Sleep!

Taylor Dillon (she/her) is one of the smartest people I know — I’ll start my interview with her off there. Her knowledge of narcolepsy and sleep science is mind-blowing. She can name the genetic marker associated with narcolepsy off the top of her head! It’s pretty incredible.

You can tell that she loves what she does. But I’ll let her tell us.

Working with Project Sleep

Even when being diagnosed with narcolepsy in 2016, Taylor remembers being fascinated with the disease. When undergoing her overnight sleep study, she remembers being so intrigued by the technology involved in the testing and the science behind it all. Taylor currently works for the narcolepsy advocacy nonprofit called Project Sleep as an independent contractor.

Taylor became involved with Project Sleep for World Narcolepsy Day 2020. She initially volunteered to help add captions to videos of speakers for the event, which at the time president Julie Flygare was doing by herself. Julie later offered her a position at Project Sleep, I’m sure after recognizing the work ethic and passion that Taylor brings to the table.

Taylor first heard about Julie Flygare, president and founder of Project Sleep, in conversation with Dr. Michael Breus — also known as The Sleep Doctor — after a presentation. He told her that Julie Flygare was the person making huge moves in the narcolepsy community. Taylor then knew that she had to connect with her.

Developing the Pregnancy & Narcolepsy Toolkit

Some of Taylor’s favorite projects she’s worked on with Project Sleep include watching discussions between medical professionals and other narcolepsy experts, including people living with narcolepsy. Taylor found creating the Pregnancy & Narcolepsy Toolkit to be a unique learning experience "with the power to change lives."

The toolkit was developed after Project Sleep’s "Pregnancy & Narcolepsy" broadcast and is the first guiding document to include medication and patient guidance for pregnancy and narcolepsy. This document provides answers to questions such as, "How should I adjust my medications during preconception, pregnancy, and postpartum?" and, "What is the likelihood that my child also might develop narcolepsy?"

Taylor says that building the toolkit was a daunting task. In one meeting with a panel of mothers with narcolepsy, she told me, “I needed everyone in that meeting to tell me everything they could, to give me direction."

Taylor recalls that embracing the experience has been exciting. Now she wants to take the new resource to a conference!

'Don't wait to look for support'

When I asked Taylor what she would say to a newly diagnosed person with narcolepsy, she responded, "Don’t wait to look for support!" She explained that while she was always comfortable talking about her narcolepsy as necessary, it wasn’t until her mom suggested looking for support groups that she actually considered connecting with the narcolepsy community. Now she feels that narcolepsy is an asset because of what it has brought into her life.

Taylor Dillon, a beach-loving California girl, found community and work that she is passionate about through her narcolepsy.