About PWN4PWN
PWN4PWN stands for People With Narcolepsy for People With Narcolepsy — and that mission is at the heart of everything we do. The organization was born out of a powerful conversation in a narcolepsy-focused Facebook group, where a shared truth emerged: while awareness around narcolepsy is growing, the lived experiences and emotional realities of people with narcolepsy (PWN) are still too often overlooked.
Many PWN face not only the physical challenges of their condition, but also deep emotional and mental health struggles caused by the drastic changes narcolepsy can bring to every aspect of life. For far too long, these struggles have been minimized or ignored by the broader medical community.
That’s why Jane E. Powell and a dedicated group of volunteers founded PWN4PWN in 2015 — to create space, resources, and real community for those who need it most. We are 100% volunteer-led and fueled by a belief in empowerment, education, and peer connection.
PWN4PWN provides practical tools and emotional support to help people with narcolepsy and idiopathic hypersomnia reclaim a sense of control, clarity, and connection. Our mission is to reach the isolated, validate their experiences, and show them that life can get better — with the right support system and strategies.
Communication tools for explaining narcolepsy to others
Time management and prioritization strategies for daily life
Peer-designed resources, like our medical info cards and printed guides for the newly diagnosed
Digital and in-person connection with others who truly understand what it’s like to live with narcolepsy or IH
Together, we’re helping PWN put the pieces back together – one tool, one conversation, one connection at a time.
Join Us
Whether you’re newly diagnosed, deep in your journey, or someone looking to make a difference — you’re welcome here. Together, we’re not just raising awareness. We’re raising each other.
- PWN4PWN: Putting the Pieces Together
