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In my dad’s eyes, I’ll always be his beautiful, inquisitive, and funny daughter. He knew me before I developed narcolepsy. Recently, I interviewed my dad, David, about my life with the rare disorder. (Sometimes you can get to know a person best through a parent’s perspective.) Although…

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…

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…

Finding the right doctor can sometimes feel like dating. Some are good people but simply not the right fit. Some may be excellent physicians, yet they do not understand your particular needs or communicate in a way that makes you feel heard. And, unfortunately, some doctors just aren’t very good…

Sept. 22 has always been a special day in my family. Long before it became a day when I would celebrate and advocate for the millions of people around the world affected by narcolepsy, Sept. 22 was already reserved for two very important birthdays: my father’s and my mother-in-law’s.

Most people don’t think twice about making dinner. They turn on the stove, preheat the oven, and start preparing a meal while listening to music or catching up on the day’s events. For me, cooking requires a completely different mindset. Living with narcolepsy with cataplexy means every…

Some songs are written just to entertain. Others come from a place so honest that they feel like something the heart has been carrying for a long time. For me, “Put in the Work” is one of the latter. I wrote and sang it from the reality of living with…

In my experience, the people I meet in the narcolepsy community often become more than friends. They become like family. They are fellow warriors, advocates, and truth-tellers who challenge me to see my disease a little differently. Solomon Briggs, a brilliant friend and fellow advocate, is one of those…

Dan Liss, a friend who has spent years showing up for our narcolepsy community, is suddenly facing something no one can truly prepare for: a home emergency that has become a major financial burden for a family already carrying more than most. Dan and his wife, Sue, recently…

One of the hardest symptoms of narcolepsy with cataplexy isn’t listed on any medication label, measured by a sleep study, or found in a brain scan. It’s the quiet battle that takes place in one’s own mind. Living with narcolepsy means fighting sleep every day. Living with…