The moment that taught me the most about hope came in Aug. 2025. I walked into the UCSF building to begin a clinical trial and decided that calculated risks were appropriate, even when the outcome is uncertain. Regardless of the risks involved, my future is worth fighting for. It was on that day that […]

My name is Saida Mahoney, I am 28 years old, and I live in California. I was born with an extremely rare genetic disease called Partial Trisomy 8q Duplication Syndrome, or Partial Trisomy 8q Syndrome for short. This genetic disease affects me in all aspects of life, having a huge impact on me neurologically. I […]

Navigating Epilepsy Together is a virtual writing support group formed in 2023 by Yarrow Rubin. Each session features a discussion topic and writing prompts based on the group discussion.  In April 2024, the group interviewed each other about their experiences in Epilepsy support groups. They prepared interview questions in advance and each attendee took turns […]

For my 55th birthday I got a tattoo, my first. It is a neuron. I’ve been contemplating this for a long time. In 2018 I got a silver neuron pendant necklace and wrote this: When I saw this silver neuron, it was love at first sight. I’m fascinated with the ritual/spiritual aspect of tattoos, but […]

  Our son was born full-term with no complications. He was very healthy and developed on track during his early months. One evening, he dropped his head abruptly about 4 times, crying. Then, he burped. Maybe it was just gas. But the next evening, it happened again…and then a third night, around the same time […]

  Since I was diagnosed with epilepsy at age 5, I’ve never experienced the range of emotions of shock, rage, fear, sadness that others have upon being diagnosed. It’s always just been part of life. My seizures were generally focal aware (simple partial), but progressed to being focal impaired awareness (complex partial). As a kid, […]