When hardship hits home, the narcolepsy community shows up
Sometimes advocacy is about making sure no one feels invisible
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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 experienced a plumbing disaster when pipes burst beneath their backyard. What began as a hidden problem quickly became an expensive one, leaving them without reliable water and sewer service until repairs can be completed. Their out-of-pocket cost is estimated at more than $15,000, and homeowner’s insurance won’t cover it. For many families, that’s devastating. For a family living with narcolepsy, it can feel overwhelming.
Sleepy peeps for life
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)
Some of the greatest blessings in my life have come from a diagnosis I never wanted. When I was diagnosed with narcolepsy with cataplexy, I thought I had lost my future. Instead, I found an entirely new family. Through Narcolepsy Network and later PWN4PWN, I’ve met people who understood me without explanation. They knew what it meant to fight overwhelming sleepiness, experience cataplexy, grieve lost dreams, and still choose hope.
One of those people is Dan. We’ve been friends for more than a decade, and I’ve watched him quietly become someone our community can count on. He has always been willing to encourage others, participate in research, and share the realities of living with type 1 narcolepsy with cataplexy so others can better understand this condition.
Life has reminded me that even the people who spend so much time helping others sometimes need help themselves. One reality we don’t discuss often enough is the financial toll of living with a chronic neurological disorder. Narcolepsy doesn’t just steal wakefulness. It can steal career opportunities, dependable employment, promotions, and financial security. Many of us want to work, but symptoms don’t follow a schedule. I’ve lived that reality myself.
When unexpected expenses happen, many families affected by narcolepsy have little financial cushion left. After spending so much time and money managing our health, something like a plumbing disaster can feel as though the ground beneath us has disappeared.
Despite these challenges, Dan has continued giving back. Earlier this year at SLEEP 2026, he participated in a patient panel and poster presentation with the biopharmaceutical company Alkermes, helping researchers and healthcare professionals better understand what living with narcolepsy is really like. Patient advocates like Dan help bridge the gap between research and real life, reminding the scientific community that every study represents people trying to care for their families and simply make it through another day. However, the plumbing repair isn’t the only challenge Dan’s family is facing.
Childhood narcolepsy with cataplexy suspected
Dan and Sue are raising their 12-year-old daughter, Amelia. Like my own daughter, Amelia has autism, creating an immediate bond between our families. We understand the appointments, the advocacy, the constant learning, and the fierce love that comes with wanting the very best for our children.
Recently, Amelia has also experienced symptoms that have raised concerns about possible narcolepsy, including episodes resembling cataplexy. Finding a pediatric specialist familiar with narcolepsy hasn’t been easy, and the uncertainty has taken an emotional toll on the entire family. As someone who remembers how long my own road to diagnosis was, my heart aches for them. No parent wants to watch their child experience frightening symptoms while struggling to find answers.
Narcolepsy doesn’t affect only the person diagnosed. It touches spouses, children, parents, careers, finances, and dreams. But it also creates something extraordinary: a community built on shared understanding.
Advocacy is more than speaking or writing
I’ve learned that advocacy isn’t only about speaking at conferences or writing columns. Sometimes it’s about making sure no one feels invisible when life gets hard. It’s about reminding one another that we don’t have to carry these burdens alone.
That’s why I wanted to share Dan’s story — not because he asked me to, but because someone who has given so much to this community shouldn’t have to face hardship in silence. We are strongest when we do more than raise awareness. We are strongest when we stand beside one another during the moments that never make it into presentations or publications. Dan has spent years helping others feel seen. Today, it’s our turn to see him.
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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