Our Story
How a logistics coordinator from Pennsylvania built an AI research initiative to fight his wife's ALS and to help everyone facing the same road.
It Started With A Diagnosis
On January 17, 2025, my wife Shawna was diagnosed with ALS. She was 36. She carries an ultra-rare mutation in a gene called TARDBP — the same gene that took her mother at 44. Her grandfather had Parkinson's. Her grandmother, early-onset dementia. Three generations of one family, three faces of the same disease.
The report came back with two words: Uncertain Significance. In plain English — we found something, we think it matters, but we can't tell you what to do about it. Go home.
I am not a scientist. I am not a doctor. I am her husband. For the first year I did what you're supposed to do: sat in the waiting rooms, filled out the forms, trusted the system to have a pathway. For a variant this rare, there wasn't one — not because people didn't care, but because the system isn't built for patients like Shawna: rare variant, no published cases, no trial that fits.
I Refused To Wait
So I stopped waiting. I'd told Shawna for a while that I had a vision for something — a research system that could take everything known about her specific mutation and connect it to every compound, every trial, every researcher, every pathway that might matter. Built around her. Not around ALS in general. Around Shawna. She believed in it before it existed. That's who she is.
I built the first version in three hours and called it InnerVara. Within forty-eight hours of sending letters I wrote myself — based on what InnerVara produced — scientists at major universities were looking at Shawna's variant. One pulled up the structure of the protein and showed me exactly where her mutation sits. A year of waiting had produced medication adjustments. Two days of InnerVara put her variant in front of some of the most relevant researchers in the world.
I didn't build magic, and I didn't build a cure. I built what happens when you organize everything that's known around one specific patient instead of around a disease in general — when a husband refuses to accept that his wife's mutation is too rare to matter. It's what happens when love has nowhere else to go.
"When I make a decision, I follow it through. Nobody stands in the way of fighting for Shawna — and for everyone facing the same road."
Who We Are
The builder behind InnerVara — a logistics coordinator who taught himself to turn a rare diagnosis into testable science.
Living with ALS and sharing the journey in her own words — new videos every week for the families walking the same road.
I built InnerVara for Shawna first. She was first. She will always be first. But I didn't build it only for her. Right now there are thousands of families sitting exactly where we were — a rare diagnosis, an uncertain report, a system moving slower than the disease. They deserve what Shawna deserved.
So the goal is simple, and it is everything: find what can help Shawna, help the families facing the same road, and help fix a system that leaves rare-disease patients waiting.
Shawna was first. She will not be the last.
Follow Shawna's Journey
New videos every week — the real fight, in her own words.