SURF1-related Leigh syndrome
She already knows what she wants to say.
The only thing missing is a fast enough way out.
The problem, in one number
Full comprehension. A motor system that can't keep up with it.
to say one word, on the best assistive device money can buy — hers. Dwell-based eye gaze, buried three menus deep. She's voted with her attention: she won't turn it on unless asked.
The plan, revised
The first plan was Nick, alone, in the evenings, building this for her.
Then the day job taught him something the first plan never accounted for.
The bottleneck was never the engineering. It's coordination — and that turns out to be something a lot of strangers can now do together, cheaply, for free, from anywhere.
Why Δ
Δ — the mathematical symbol for change. The difference between what was and what is.
A macro shift in what's suddenly possible, aimed at a cause that's small against that scale — exactly the kind of thing a shift this size is supposed to reach.
not a logo picked at random — a change already being lived, put to work.
How it holds together
Three layers. None of them work alone.
Where anyone can see it's real.
Expert or total stranger — in about ten seconds, they can tell something is actually moving forward.
A short list of real problems.
Deliberately small. Scoped tight enough that a stranger can finish one in an evening, not abandon it in ten minutes.
The part that used to need a staffer.
Now it's mostly AI drafting quietly in the background. A person just has to say yes.
Every altitude counts
It has to make sense to whoever shows up — however they showed up.
A friend tags us in a post because they thought of Delta today.
human · secondsA kid's lemonade stand, one Sunday afternoon.
human · an afternoonSomeone running a marathon who just needed a cause to run it for.
human · a training blockA data scientist pointing a spare evening and their own AI subscription at a SURF1 dataset.
signal · one eveningA robotics student, somewhere we've never been, teaching a machine to read a shaky, well-meant reach — and finish the motion the rest of the way.
signal · a semester projectWho keeps it alive
Three kinds of people, and one kind of tool. None of it runs on its own.
Builders
Make things — code, hardware, data models, prototypes. Anywhere in the world, on their own time.
Stewards
Keep it warm. Decide what gets told, and how. No code, ever — by design, not by limitation. The kind of role that might suit you, and everyone you already know how to gather.
Agents
Do the constant, unglamorous work — watching, drafting, matching — so a steward's job is to shape and approve, never to start from nothing.
Why agents matter
One evening, multiplied.
The same hour of a stranger's effort produces something very different depending on what's waiting for it.
Alone: a volunteer finds an hour, builds something real, and it waits — for someone, usually Nick, to notice, write it up, and think about who's next.
Multiplied: same hour — but scoping already made it startable, the ledger already drafted what happened, and triage already knows who's free for what's next. One input, three outcomes, no one waiting on Nick.
Two tracks, moving now
There's a cure moving too — published, FDA pathway mapped, funded past the hardest part, with one clear number left between here and a trial.
This isn't in place of that — it's the track that can move today, on its own timeline, while that one runs on its.
A better Tuesday — and a shot at every Tuesday after.
This isn't decided. It isn't built. It's barely even named.
But it's an idea that feels big enough to hold both fights at once.
What do you think?