This coming weekend and into next week, I’ll be attending the Hypersomnia Foundation ‘Beyond Sleepy’ Conference and the American Association of Sleep Medicine ‘SLEEP’ Meeting – two major events in the world of sleep medicine. While the SLEEP Meeting is primarily for medical professionals, researchers, and advocates, it’s essentially the CES of Sleep Medicine – a hub for cutting-edge sleep tech, insights, discussions, and developments in the field.
For years, I’ve immersed myself in the science behind Narcolepsy. With five self-published books, a website dedicated to advocacy, and my recent development of the Narcolepsy Symptom Severity Range Tool (NSSRT), I’ve been working tirelessly to bridge the disconnect between medical terminology and real-life experience. The NSSRT offers a deeper, more precise dissection of symptoms – going beyond the oversimplified language often used in research and clinical settings. It’s freely available online, and I hope it will be adopted and used by others in the field, whether advocates, nonprofits, or doctors themselves.
This trip is different from past events I’ve attended. I’m not just showing up to listen – I’m stepping forward with something tangible. I’ve printed a one-pager outlining who I am, what I do, what I offer, and why this matters. It includes my contact info, links to my website, Patreon, YouTube, and Amazon author’s page. My hope is to connect with some of the top researchers, hand them my materials, and – ideally – engage in conversations that might lead to further collaboration or recognition of the work I’ve put into this space.
Yet, this isn’t easy. The biggest challenge isn’t just getting noticed – it’s navigating my discomfort in crowded public environments and the dynamic of being viewed as merely a “patient” among professionals in suits. I’m deeply passionate about this field, but I struggle with approaching people, making introductions, and asserting my presence in spaces where I feel like an outsider.
Financially, this trip is a strain. Between flights, hotel costs (which I’m splitting with someone I’ve never met), food, and transportation, it’s adding up to around $1,000 – money I frankly don’t have. But I see this as an investment. I’ve been active in advocacy for a long time, but if I can’t get my work seen, if I can’t make meaningful connections, if my efforts continue to be overlooked, I fear this might be the last big step I take.
I want to open the floor to engagement:
- Thoughts on what I’m doing? If you have input, feedback, or questions, I’d love to hear them.
- Are you interested in the NSSRT? It’s available for free online – check it out and let me know what you think.
- Want to help support this trip? If you believe in my work, contributions to cover expenses would mean a lot. Donations aren’t expected, but if you’re interested, you can find links on my website and Patreon.
This trip isn’t just about showing up – it’s about pushing forward, making an impact, and proving that lived experience has value beyond just personal struggle. I don’t want my insights to fade into the background, and I hope to walk away with more than just another set of conference notes – I want connection, engagement, and the possibility of real change.
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Disclaimer: The information provided in this article is intended for informational and educational purposes only. Seek a qualified medical professional with expertise in Narcolepsy for diagnosis or treatment. I am not a medical professional.
Created by: Solomon Briggs
(aka Narcoplexic)
May 24th, 2025
Bridging the Gap: Taking the Next Step in Advocacy © 2025 by Solomon Briggs is licensed under CC BY-NC 4.0
To view a copy of this license, visit https://creativecommons.org/licenses/by-nc/4.0/
“You may use this tool for non-commercial purposes, but must credit Solomon Briggs.”
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