Biotech, Neurology, and the Work of Healing in the AI Era

This post is meant as reflection and discussion. It comes from lived experience and curiosity, not medical advice. Any ideas or tools mentioned here should always be considered thoughtfully and in conversation with a child’s medical team, especially when seizure risk or neurological vulnerability is part of the picture.

For a long time, healing in neurology has been framed as something we wait for.
A drug in development.
A trial that may or may not finish.
A cure that exists in theory but not in time.

But for families living inside neurological disease, waiting has never been neutral.

This work didn’t start because technology became interesting. It started because survival demanded it. And Galactosemia Reimagined exists because survival alone is not enough.

This week I’ve been spending a lot of time in the biotech and neurotechnology space.

Not because I think there’s a miracle device out there. And not because I’m chasing shiny things. But because when you’re raising a child with galactosemia, you learn quickly that doing nothing has never helped us. There is no real status quo.

We’re taught that learning happens in a box. Same pace. Same method. Same expectations. But that’s not how people actually learn. I didn’t feel like my own brain fully came online until I was about twenty-five. So why would I expect my eight-year-old to fit a rigid timeline?

So I try things.

I’ve tried nearly every sensory tool, learning aid, kit, book, and strategy I can find that might help Penelope. And none of it is one size fits all. Because there isn’t a diagnosis standing in front of me. There’s a person. She’s eight years old and already fully herself.

Repetition helps. The science supports that. But repetition is also boring. Imagine being told the only way you’re allowed to learn is by doing the same thing over and over. Eye roll from Penelope. Eye roll from me.

I want more for her. I want learning that feels imaginative, flexible, and a little abstract. I hate the idea of telling her she has to work harder than everyone else just to keep up.

So I read papers late at night. I watch demos. I follow companies most people have never heard of. I think about how fatigue shows up, how much effort it takes for Penelope to do things other kids don’t even notice. And then I reach out.

I send emails to people building tools in biotech and neuro tech all over the world. Sometimes they’re founders. Sometimes engineers. Sometimes researchers. Sometimes just someone testing an idea that hasn’t found its place yet.

Most of those emails go unanswered. Some get a polite reply. Every once in a while, someone writes back and says, “I hadn’t thought about it that way, but maybe.”

That’s enough to keep me going.

From the outside, it probably looks like I’m trying everything. And honestly, that’s because I am. Carefully. Thoughtfully. Within reason. But still with urgency.

Galactosemia doesn’t live in one box. It shows up in speech, fatigue, motor planning, attention, and how long a day feels. It’s metabolic, but the impact is neurological, cognitive, and whole-body. Traditional care doesn’t know what to do with that gray space.

Biotech and neurotechnology live there.

I’m not looking for cures here. I’m looking for support. For ways to reduce the load on her nervous system. For tools that help her brain work a little less hard just to do what other kids do automatically. For anything that makes school days less exhausting, speech a little easier, recovery a little faster.

When you’re told again and again that there’s nothing else to do, what that usually means is there’s nothing else that’s been studied. That doesn’t mean there’s nothing else that could help.

And Penelope only gets one childhood.

So yes, I try things. I ask questions. I knock on doors that aren’t labeled for us yet. Not out of desperation, but out of intention. Out of love. Out of refusal to let curiosity end just because a condition is rare.

I don’t need guarantees. I need possibilities.

Years ago, long before neurotech and AI were everyday language, I was already watching this space. I was drawn to people who believed the brain could adapt, that technology could listen instead of force, that agency could exist even when the body struggled.

In 2020, I read The NeuroGeneration by Tan Le. She built a system that allowed a person with paralysis to drive a car using thought alone. It cracked something open for me. If that was possible, what else might be?

I reached out to her not as an advocate or strategist, but as a mother. At the time, she had just had her first baby herself. She answered with kindness, mom to mom, at a moment when the future felt fragile.

In her book, she describes escaping Vietnam as a child with her mother, leaving by boat with no guarantee of survival. Only the certainty that staying meant no future.

That image has stayed with me.

Because in my own way, I’m in that boat too.

Trying to keep my child safe.
Trying to keep her afloat.
Trying to move forward while systems catch up.

When I first explored these technologies, Penelope was too young. The tools weren’t built for developing brains, fatigue-sensitive systems, or children with seizure risk. So we waited.

But the search never stopped.

What’s changed isn’t the need.
What’s changed is the era.

And I’m still here. Still asking. Still looking. Still believing that curiosity itself is a form of care.

Healing is not one thing

In Galactosemia, and in pediatric neurology more broadly healing is rarely binary. It is not “fixed” or “not fixed.”

Healing can mean:

• reduced brain fatigue

• improved motor planning

• fewer sensory crashes

• longer attention windows

• smoother speech initiation

• calmer autonomic responses

• better recovery after exertion

• happy- fun learning

Sometimes healing doesn’t look dramatic.
Sometimes it looks like less effort to do the same thing.

That means the options we explore cannot be limited to pharmaceuticals alone.

What this era makes possible

We are now living in a moment where:

AI, neurotechnology, and biotech can finally adapt to the nervous system instead of forcing the nervous system to adapt to rigid tools.

That matters for children.
It matters for rare disease.
It matters for brains that don’t follow predictable rules.

In Galactosemia Reimagined, this means looking carefully and responsibly at:

• neuro-adaptive feedback systems that respond to fatigue rather than pushing through it

• wearable neurotech that detects patterns instead of enforcing performance

• non-invasive sensory and autonomic regulation tools designed to calm, not stimulate

• visual-motor integration supports for tracking, timing, and coordination

• assistive technologies that help the brain plan rather than prove it already can

Some of these tools are sophisticated.
Some are remarkably simple.

A string with weighted balls for visual tracking can matter just as much as an EEG headset. The nervous system learns through rhythm, repetition, and safety. Sometimes the most powerful intervention is the one that allows practice without fear.

Why apraxia of speech opens the door

As part of this work, I recently reached out publicly to the biotech and AI community with a very specific challenge: build neuro-adaptive technology for apraxia of speech.

Not another static app.
Not a repackaged therapy tool.
But a system that actually matches the problem.

Apraxia of speech is not a language deficit.
The words are there.
The understanding is there.
The breakdown is in motor planning, timing, sequencing, and fatigue.

That makes apraxia one of the clearest models for what adaptive neurotechnology should be able to solve. And often Speech therapies are not offered to our adults. AI adaptive designs to support life with apraxia at home in their own time a safe spaces.

For Galactosemia, speech difficulties often reflect the same pattern: intact language trapped behind inconsistent motor execution and neurological fatigue. That signal is not random. It is detectable. And in this era, it is increasingly modelable.

If biotech and AI can solve apraxia responsibly — in a fatigue-aware, seizure-aware, pediatric-appropriate way — the implications extend far beyond one diagnosis.

This is not about replacing speech therapy.
It is about giving therapists and families tools that finally match how the brain actually works.

Safety is not optional

This part matters enough to say clearly.

Not all neurotechnology is safe for children.
Not all neurotechnology is safe for people with seizures.
Not all stimulation is therapeutic.

That is why I reach out to companies asking for:

• evidence-based mechanisms, not marketing

• seizure-aware design

• pediatric considerations from the start

• transparency about contraindications

• honesty about what is still unknown

Exploration without guardrails is not innovation.
But refusing to explore because perfection doesn’t yet exist is not ethical either.

This is not prescription.
It is a responsible search.

A door worth opening

There is something important about this moment.

AI can now adapt in real time.
Sensors can detect subtle neurological shifts.
Design no longer has to assume a “standard” brain.

So the question is no longer whether better tools are possible.
The question is who they are built for and who is left out.

Galactosemia Reimagined is not asking for charity.
It is extending an invitation.

To the best engineers.
To the best neurothinkers.
To the builders who want real problems, not theoretical ones.

Survival taught us to keep going.
This era gives us the chance to build something better together. I hope this inspires more innovation for our community.