Trisha L

Today, on my birthday, I had the opportunity to meet with the research team at Baylor to discuss updates on Logan and Iris's SPTAN1 program. There was no big announcement about the progress, other than we are in a good place and moving forward. However, I left feeling something I haven't felt in a while. Possibility. For so long, the conversation has centered around waiting. Waiting for research. Waiting for answers. Waiting for timelines that seem to stretch farther every time they're...

What to Expect Early On If you’re here, you were probably just handed a diagnosis you’d never heard of and then sent home to figure it out. That part is real. And it’s hard. There isn’t a clean roadmap for SPTAN1. And those early days were overwhelming for me. So I wanted to share some of what I wish I’d known back then, in the hope that it gives someone else a bit of clarity, guidance, or even just a place to start. The variant matters...more than you think One of the first things you’ll...

Self-care sounds lovely in theory. It’s the bubble baths and yoga classes and quiet mornings with hot coffee. It’s the pastel Instagram graphic reminding you that “you can’t pour from an empty cup.” But what if your cup has a feeding pump attached to it? What if your mornings start with seizure meds and therapy appointments?What if your nights are interrupted by alarms, coughing, or the low hum of machines? What if self-care doesn’t just feel hard — it feels impossible? Lately, my body...