Finding my narcolepsy community at a Texas town hall and Kentucky camp

Sometimes the most important part of living with narcolepsy isn’t a treatment, a diagnosis, or a medical appointment. Sometimes it is finding people who understand you without needing an explanation.

For me, that journey began in the fall of 2022, when Wake Up Narcolepsy (WUN) invited me to attend a WUN Town Hall in San Marcos, Texas. I wanted to go immediately. It sounded like a big Texas narcolepsy gathering, and I loved the idea of meeting other advocates, learning more, and simply spending time with people who understood life with narcolepsy.

My mom drove my daughter, Savannah, and me to San Marcos, and we had an amazing time. With Christmas approaching, the event included painting, fun activities, education, and plenty of opportunities to socialize. It felt less like attending a meeting and more like being welcomed into a community.

That weekend was the beginning of some incredibly special friendships, including with fellow patient advocates Katy Scruton and Brian Mahn. What started as conversations at a town hall grew into friendships that continued through many future events together.

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Columnist Rachel Nesmith, front, is joined by Katy Scruton and Brian Mahn at the Wake Up Narcolepsy Town Hall in San Marcos, Texas, on Nov. 2, 2023. (Courtesy of Rachel Nesmith)

I was especially excited when Katy, Brian, and I had another opportunity to spend time together at the WUN 2024 National Summit in Seattle. We became quite the Texas trio. I listened to their presentations and was amazed by their willingness to share their individual experiences and advocate for our community. I also loved hearing the stories of so many talented patient advocates and speakers.

But some of my favorite memories happened after the presentations. The three of us played miniature golf, laughed together, and even had a few moments of cataplexy. Those are the moments I treasure because there was no need to explain what was happening. They understood. That is one of the most beautiful things about finding your people.

WUN’s 2025 family camp

My relationship with WUN continued to grow, eventually leading my family to another unforgettable experience: a family camp at the Center for Courageous Kids in Scottsville, Kentucky.

WUN’s executive director, Tammy Anderson, and outreach and engagement manager, Jenny Rose, expanded the camp’s programming to include parents with narcolepsy who are raising children with certain disabilities. That opportunity was especially meaningful to me because my daughter, Savannah, has lower-needs autism.

From left, Katy Scruton’s mother and the “Texas Trio” — Katy Scruton, Rachel Nesmith, and Brian Mahn — meet up for a “naptastic” time indoor miniature golfing at the WUN National Summit in 2024. (Courtesy of Rachel Nesmith)

My mom, my dad, Savannah, and I were invited to attend. WUN and the camp provided lodging, food, and activities for three days. We only needed to cover our airfare. I still cannot adequately express how grateful I was — and am — for that generosity. Our family had an incredible experience.

Savannah got to ride horseback, climb a rock wall, participate in arts and crafts, enjoy face painting and music, play games, and take part in activities such as trunk-or-treat. I especially loved playing miniature golf with Savannah and my family.

What made the experience even more meaningful was the understanding.

With narcolepsy, I sometimes need to sleep when other people are awake. During camp, I could take a nap outside on a park bench or wherever I could comfortably rest, and nobody made me feel embarrassed or guilty. Nobody questioned it. They understood. That kind of acceptance is powerful.

“Sleepy” was never something I had to apologize for there. I could be myself: an advocate, a mom, a friend, and a person living with narcolepsy. Those simple moments of belonging reminded me that I don’t have to navigate this journey alone.

I also loved watching two sleep professionals living with narcolepsy type 1 — Luis Ortiz, MD, and Kelsey Biddle, MD (then a medical student) — share their knowledge and personal experiences. They brought valuable perspectives to a weekend that was already filled with connection, laughter, and learning.

From left, Rachel Nesmith, Jenny Rose, and Savannah Harrison attend WUN’s family weekend at the Center for Courageous Kids in Kentucky in 2025. (Courtesy of Rachel Nesmith)

But when I look back, the moments I remember most aren’t necessarily the formal presentations. They are the friendly faces. The laughter. The conversations. The miniature golf. Watching my daughter try new things. Making s’mores on the first night. And knowing that my family was surrounded by people who understood us.

These experiences have taught me that narcolepsy advocacy is about much more than raising awareness. It is about creating a place where people can belong.

A diagnosis can sometimes make you feel isolated. Finding a community can do the opposite.

The journey that began with a town hall in San Marcos introduced me to friendships I treasure, opened the door to incredible advocacy experiences, and gave my family memories we will never forget.

For me, WUN helped create those opportunities. More importantly, it helped me find my people.

And sometimes, finding your people is one of the greatest gifts advocacy can give you.

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.