For Families.

The thing I wished existed

I built this for a reason of my own — the short version is on the motivation page. So I’ll be straight with you about what an honest forecaster owes a family. What I kept wishing for was something honest and concrete: not “this disease is different for everyone” (true but useless) and not false precision — just a calibrated sense of the trajectory, with real uncertainty bands, while there was still time to act on it.

The goal of this pillar is to eventually build that. A plain-language version of a calibrated ALS and Alzheimer's progression forecaster: what the model thinks is likely, what it doesn't know, and what the uncertainty actually means for decisions families have to make.

Why it doesn't exist yet

This page can't exist until the forecaster deserves to. A poorly calibrated model handed to a family member is worse than no model. The rule is: earned, not promised.

This page ships when two gates open — both of them, not just one:

1. Data access. The speech signal would come from DementiaBank and the Speech Accessibility Project; longitudinal ALSFRS (the standard ALS functional-rating scale) functional-scale data from the PRO-ACT cohort (ALS); and the Alzheimer's clinical track from the ADNI cohort. Data-access applications are in progress; the molecular study used only public data, and the speech and clinical tracks begin only once access is granted. Access is not guaranteed on any timeline.
2. A calibrated forecaster. The clinical prognosis model must pass the calibration bar I would trust in the hands of my own family — not publication-grade optimism, but honest uncertainty bounds on the decisions that actually matter: how much time, what functions first, what the range looks like.

The molecular track (the investigations already live) is the foundation. None of it reaches families until both gates are open.

If you're a family member

The build log is the most honest thing I can offer right now. It documents what the model can and can't do, in plain language, as the work happens.

If you want to talk, want to be notified when this is ready, or want to hold this work to its own stated standard — reach out directly. Families who've been through this deserve honesty, not promises. That includes hearing from me if the gates don't open, or if the forecaster never earns the bar.