2/5
When you have ALS, you experiment. Supplements, drugs, hope. See alsuntangled.com for why that's so common.
So I built ALSTracker. It won't give you certainty. But it replaces gut feeling with something more solid: Bayesian statistics.
alstracker.mpi-dortmund.mpg.dee
3/5
ALSTracker tracks disease progression across different phases – reference vs. intervention. It can't replace clinical trials. But it gives you a personal, data-driven picture.
It's open source. Free. No data collected. github.com/MPI-Dortmund...
1/2
I'm part of the ANQUR clinical trial by QurAlis – testing QRL-201, a drug designed to restore a protein called STATHMIN-2 that most ALS patients lose.
Interim data published last week show promising results.
www.quralis.com/news/quralis...
4/5
Here's the honest part: I barely used it myself.
I'm part of a clinical trial. The measurements came constantly. At some point, all that tracking just pulled me down. Numbers that remind you, over and over, what you're losing.
5/5
But I built it also for others. And maybe that's enough.
Building it felt like agency. Like pushing back. That's what I'm looking for in every project I'll share here.
More to come.
1/5
ALS takes a lot. But it doesn't take curiosity. A new thread: how I stay motivated – through projects that are meaningful, or simply fun 🧵
is here someone who knows speech synthesis with XTTS v2 really well?
2/2
Promising enough that an open-label extension is planned – all eligible participants will receive the drug. Phase 3 in 2027.
I'm one of the 69 patients. And honestly? I hope I was in the placebo group – because so far, I haven't noticed any slowing.
🫁 Had my lung capacity measured recently.
Nurse asks with concern: "Have you started smoking?"
Me: "No, but I recently started smoking crack."
Dead silence. Pen hovering mid-air. Pure confusion.
She did not put that in my chart. 💀