Discovering Community and Growth with PWN4PWN

I wanted to take a moment to shine a light on an organization that has been a part of my life over the past few months: PWN4PWN. This non-profit, dedicated to supporting individuals with Narcolepsy and Idiopathic Hypersomnia (IH), has impressed me with its openness and forward-thinking approach.

My journey with PWN4PWN began before going in early June when I attended SLEEP2025 in Seattle. Though there, I had the pleasure of meeting the passionate individuals behind the organization, all of whom live with narcolepsy themselves. They extended an invitation for me to join their Outreach Committee, and despite my small social media presence, I accepted. I committed to offering my honest perspective and contributing in what ways I can. These are truly good people, and I’m grateful to now count them as friends.

One person I’ve particularly connected with is Alejandro Bruner-Solas, who handles their video and media. I’d actually spoken with him previously when he was with a different organization. He’s a talented photographer and a genuinely nice guy; we hit it off right away, and I’m happy to have him as a friend.

Engaging in Pilot Programs: Jobs and Wellness

I’ve been actively participating in two of PWN4PWN‘s “free” pilot programs, both designed specifically for People With Narcolepsy (PWN) and IH: the “Jobs Project” and the “Health Wellness 360 Program.” These past few months have been quite insightful. They do have a long way to go but regardless the sessions offered different things of value, and just those attending offering their perspectives within the sessions, towards living with Narcolepsy is value-able for others.

Through the Health Wellness 360 program, I’ve been paired with an accountability partner in Oklahoma. For about two months now, we’ve been having weekly phone calls which aren’t even about nor for the program itself, sharing our unique perspectives, discussing our experiences, and offering each other support simply by talking Narcolepsy things through.

The “Jobs Project” has also been good. It’s largely involved engaging in conversations about use of Artificial Intelligence (AI) with Sam Velu, the driving force behind the project. While Sam doesn’t have narcolepsy himself, he’s a job recruiter with a wealth of knowledge. This program has really encouraged me to build and expand my network on LinkedIn. Sam has also introduced me to a variety of AI tools that offer real value in today’s rapidly evolving landscape. I’d already experimented with AI quite a bit, but there’s so much more potential for its use as it becomes part of everyday things as time goes on.

You might even notice that my writing has become clearer and smoother on this blog lately. This is partly due to some of the tools I’ve been using to refine my writing. It’s important to clarify that I don’t use AI to generate content or answers. Instead, I leverage it to help me clarify my manner of writing, clarifying certain concepts to me that I might not fully grasp, or to broaden my understanding of specific terms. Any practical application of AI has been very specific, focusing on taking my existing writing and making it more accessible and easier for others to read and interpret.

Looking Ahead with PWN4PWN

PWN4PWN is still a very new organization, and its place among the various narcolepsy organizations will evolve over time. My sincere hope is that it not only endures but thrives, growing to offer even more valuable tools, grow more deep and value-able connections, potentially host events in the future. I know they’re currently working on several initiatives, including some upcoming toolkits.

They also offer a nice “Circle” app that connects people and hosts dedicated sections for programs like the Jobs Project and HW360. This platform has immense potential as a valuable resource for the community.

Furthermore, PWN4PWN hosts a monthly group meeting called “NapChat” on the first Monday night of each month at 8:30 PM EST. I’ll be the guest speaker for next month’s NapChat, on August 4th! I haven’t fully outlined my talk yet, but I plan to share some of my personal story, take questions, and engage with the group.

For me, PWN4PWN has been a truly positive experience, leading to new and meaningful relationships with the wonderful people involved.

I’ve also shared a colorized version of my “Brain Fog Tree” illustration with them, which you can see and read about in a previous blog post. I’m eager to see how they choose to utilize it, hoping it will reach more people and, in turn, help others discover my work as well.

If you haven’t heard of PWN4PWN or explored their website yet, I highly recommend you check them out. Don’t hesitate to join their community or participate in their current and future programs!

Created: July 14th 2025

A group shot at one of the evening sessions, this one put on by Avadel, at SLEEP2025 in Seattle.
Myself, Alejandro Bruner-Solas, Jane Powell, Alan Bush; Tara O’Connor, Rachel Nesmith.