NapChat helped me find my voice as a narcolepsy advocate
Through PWN4PWN's programs, I've gained confidence, skills, and community
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Two years ago, a dream that changed my life came true.
For some time, my friend Alejandro Bruner-Solas and I had imagined co-hosting a live podcast or presentation series that could bring our narcolepsy community together regularly. We weren’t sure it would ever happen.
From left, PWN4PWN volunteers and employees Rachel Nesmith, Tara O’Connor, Alan Bush, Jane Powell, and Alejandro Bruner-Solas pose for a photo on the upper deck of the Space Needle in Seattle during SLEEP 2025. (Courtesy of Rachel Nesmith)
Then, everything changed when Alejandro was hired as program director for PWN4PWN by Jane Powell, the organization’s CEO and executive director. The acronym stands for “people with narcolepsy for people with narcolepsy.” When Jane told him that a monthly show called “NapChat Live” was becoming a reality, Alejandro was thrilled, but he had one condition before accepting the role: He wanted me to be his co-host.
I am deeply grateful he did. Over the past two years, I’ve had the privilege of sitting behind the mic with him, learning from doctors, an attorney, patient advocates, Transportation Security Administration employees, and many others who have generously shared their expertise with our community. I’ve formed unexpected friendships and grown in ways I never imagined when this began as a hopeful idea between two friends.
One time, I highlighted my unfortunate cataplexy misadventures while traveling home to Dallas from the SLEEP 2025 meeting in Seattle. I’ve also discussed what it’s like to apply for Supplemental Security Income and Social Security Disability Insurance.
We do it all, first and foremost, for patients.
PWN4PWN’s free patient programs
In addition to co-hosting “NapChat Live,” I serve as an admin for our online community, NapChat, and as a member of PWN4PWN’s volunteer outreach committee. I welcome new members, contact potential speakers for upcoming episodes, and provide feedback on resources our volunteer network sends to future guests. This work matters deeply to me because I know how powerful it is to find a community that truly understands what you are going through. PWN4PWN’s programs have helped me grow not only as a volunteer but also as a participant.
From left, PWN4PWN program director Alejandro Bruner-Solas, nurse practitioner Maggie Lavender, and patient advocates/volunteers Dan Liss and Rachel Nesmith send greetings from the PWN4PWN exhibitor booth at SLEEP 2026. (Courtesy of Rachel Nesmith)
When I joined the organization’s Health and Wellness 360 program, I was in the middle of a weight-loss journey and unsure whether I could stay committed. The program helped me look honestly at my nutrition and activity levels while giving me the mindfulness and inner strength to make lasting changes. I am proud to say I have since lost 70 pounds.
The Jobs Project also came into my life when I needed it most. I hadn’t held a real job since my narcolepsy diagnosis and kept hoping the right opportunity would come along. Through the project, I had access to workshops, professional résumé support from Sam Velu, and Udemy courses to strengthen my skills.
Soon after, I found an opening at Narcolepsy News, a Bionews publication, for a columnist position, and had to apply. It became my first job since my diagnosis, and I owe my success largely to the confidence and preparation PWN4PWN’s programs gave me. Self-esteem and confidence are so important to mental health, particularly in people with narcolepsy.
My dream now is to build on that success and keep showing the world what I know to be true: People with narcolepsy are valuable members of society. We are dedicated workers, despite the real challenges we face each day. Sometimes we simply need flexibility, understanding, and a community that believes in us.
What I love most about NapChat is the people. The friendships and memories I’ve made with fellow advocates for narcolepsy, idiopathic hypersomnia, and other sleep disorders mean more to me than I can express. Through PWN4PWN’s programs, I’ve learned how to navigate a world that wasn’t designed with us in mind. I’ve also learned that, with the right adjustments and a supportive community behind us, we can show the world what we are capable of.
When your family supports you well, it’s as if you’ve been given wings to fly. When you find your people, you know who they are. We love our sleepy peeps! We are a force to be reckoned with, and I am honored to help share that story, one episode of “NapChat Live” at a time.
Until next time, do sleep justice. Same nap time, same nap channel.
Note: Narcolepsy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Narcolepsy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to narcolepsy.
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