“Have you heard of ALS?”
That was the question my neurologist asked me eleven months ago.
It was my third session with the neurologist, after months of tests, MRIs, nerve conduction studies, EMGs, bloods, consultations, all of it. Even up until the words left his mouth, I still thought it was going to be something else. Something easier. Something fixable.
But it wasn’t.
I don’t remember much of the conversation after that. My wife and I walked out of the office and cried together outside of the clinic. A rare diagnosis had suddenly become our reality, with a likely outlook of two to five years. No cure. A system designed not to save you, but to make you comfortable as you slowly lose the ability to move, speak, or breathe.
That night, I started writing. Lists of practical things I wanted to do. Notes on supplements. Rabbit holes of research. And I stumbled into the online ALS community, forums full of people like me, across Australia, the US, the UK, and elsewhere around the world. People facing the same hopeless prognosis, all asking the same question... what else can we try?
The truth is, the medical system doesn’t give us much. A couple of drugs that “maybe” give you a few extra months. Trials that recycle treatments from other conditions. Clinics that measure decline, but don’t capture the bigger picture, our environment, diet, exposures, regimens. Science moves slow. ALS doesn’t.
On the forums, though, it’s chaos and possibility. Hundreds of people experimenting with supplements, protocols, off-label drugs. Some swear they’ve slowed progression. Others fall victim to scams preying on the desperate. It’s messy, unregulated, and human. And in the middle of it, I started taking 15 to 20 supplements a day, chasing interventions that might improve mitochondrial function, energy, gut health, anything that might slow this disease down.
But there was a problem.
I had no way to track it. No way to connect what I was taking to how I was feeling. No way to see whether the changes in my symptoms were coincidence or cause. My cupboard looked like a chemist’s warehouse. My doctor would ask what I was on, and I had no clean list.
So I started building one.
Why I Built StackDat
StackDat began as a way to manage my own health stack, every supplement, drug, therapy, and device I was using, along with the reasons why. It has grown into something more, a tool for anyone facing ALS or another chronic condition who wants to reclaim some clarity in the mess.
Because after a long time digging into what we know, it feels like ALS isn’t one disease with one solution. It presents differently in everyone. Some people live months. Others live decades. Some start in the limbs. Some in the throat. Symptoms jump around. That’s why I can't see a path to a single silver bullet drug.
What we need is data.
Not just clinical trials that take ten years to tell us what doesn’t work. We need the day-to-day, lived data. What people are taking. What’s helping their symptoms. What’s not. Where there are overlaps and patterns. That’s where StackDat comes in.
What StackDat Does
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Record your full health stack: Conditions, symptoms, and every item you’re using, supplements, prescriptions, devices, therapies. Along with your “why.”
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Track and map: Connect items in your stack to the symptoms they’re meant to treat. Create goals. See progress over time.
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Share with control: Keep your stack private, share it with your care team, or make it public with fine-grained controls.
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Overlay device data: Right now, you can sync Oura Ring data, sleep, HRV, activity. More devices are coming.
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AI with context: Chat with AI that actually knows your stack. Ask what a supplement does. Ask how it interacts. Ask what else you should be looking at. AI is already beyond what any one doctor can provide when it comes to breadth of knowledge.
The Road Ahead
StackDat is early, but it’s real. I built it out of necessity, but it’s for anyone living with ALS or any chronic condition that doesn’t fit neatly into a box. It’s for the people who are tired of being told to wait.
If that’s you, I’d love for you to try it, use it, and shape it with me.
👉 https://www.stackdat.com/sign-in
Because until there’s a cure, we need better ways to live, track, and fight. And we can’t afford to wait for someone else to build it.
