ALS Is Taking His Voice. So He Built a New One.

When David first noticed something was wrong, he was coming off one of the healthiest periods of his life.

He was an avid cyclist. In 2023, he had spent a week riding through the French Alps. By early 2024, he was training to ride across Britain.

Then his body stopped responding the way he expected.

There were strange muscle twitches. His feet were not moving naturally on the bike. By the end of the day, his speech began to slow. He started slurring his words when he was tired.

After months of specialists, tests, and uncertainty, David arrived at Massachusetts General Hospital in December 2024 and received the diagnosis he had increasingly feared: ALS.
For someone whose career had been built around communication, one consequence of the disease immediately stood out.

His voice might disappear.

When Your Voice Is Part of Who You Are

David had spent more than two decades advising health systems and working as a consultant. Talking was not simply something he did. It was how he thought.

He describes himself as someone who processes the world out loud. He works through ideas by speaking. He solves problems through conversation. His voice is part of how he relates to other people and makes sense of his own thoughts.

So when his speech began changing, the prospect of losing it felt like more than losing a physical ability.

It meant losing part of the way he existed in the world.

That realization eventually led him toward voice cloning technology. His first attempts disappointed him. The synthetic voice sounded flat and robotic.

Then he found technology that sounded much closer to him.

When David first heard a convincing clone of his own voice, he could not stop smiling.

It was recognizably his.

And that changed the problem completely. Instead of recording a limited collection of phrases for some unknown future situation, he could preserve something much more flexible: a version of his voice capable of saying things he had not yet thought to say.

He Had Never Built an App Before

David did not come from a software engineering background.

But after examining the communication tools available to people with ALS, he believed there had to be a better approach.

Traditional assistive communication could create an awkward delay while someone typed what they wanted to say. Conversations could move on before they had finished. Other people could disengage.

David wondered whether artificial intelligence could reduce that gap.

Could AI predict larger pieces of a sentence rather than just the next word?

Could someone provide a few words, a subject, and a tone, then receive possible responses they could choose from?

Could modern voice cloning make the final result sound like the person rather than a machine?

Could all of it run on ordinary consumer devices instead of requiring expensive specialized hardware?

David started teaching himself.

Within roughly 80 days, he had built the first version of what became Talk to Me Goose.

He released it in March 2025. Users began sending feedback. The project grew, and through a partnership with the Live Like Lou Foundation, the technology was made available to families living with ALS in North America. At the time of the conversation, David said the app had reached its 125th family for free.

The Technology Became Something More Personal

One of the most powerful examples came from a father with ALS who had young children.

His three year old daughter had never heard him read her a bedtime story in his own voice.

That led David and his team to build a story feature into Talk to Me Goose. With a few inputs, a parent can create a personalized bedtime story and have it spoken using their cloned voice.

David also hears from users who say the technology has helped them joke with their spouses again.

These may appear to be small moments.

They are not.

They point to something easy to miss when communication technology is treated purely as an engineering problem. Speech is not only about transferring information. It carries personality, humor, timing, intimacy, identity, and relationships.

But There Is a Line David Will Not Cross

The same technology that can preserve someone’s ability to participate in a conversation can also begin to participate for them.

That distinction matters deeply to David.

One proposed feature would allow the AI to listen continuously to a conversation and automatically generate responses based on what other people were saying.

Technically, David believes it could be done.

He does not want to do it.

If the system is constantly listening and deciding what he might say next, he worries that the technology stops supporting the person and begins replacing them.

For someone already facing a disease that progressively removes physical abilities, that is not an abstract debate about artificial intelligence.

It is a question of agency.

“Where do I sit in this conversation?” he asks.

His goal is not to create an AI that speaks instead of him. It is to build one that helps him remain in control of what he wants to say.

As he puts it, he wants to remain in the driver’s seat.

Becoming the Patient

David’s diagnosis also forced him to confront another part of his career.

For years, he had advised physicians and health system leaders about patient experience. He emphasized listening, empathy, and the importance of treating the patient as the person who knows most about what is happening inside their own body.

Then he became the patient.

During the long process of reaching an ALS diagnosis, David repeatedly felt that physicians were not hearing what he was telling them.

Eventually, when he reached specialists in Boston, the experience changed. They listened carefully. They took the history seriously. They understood what he had been experiencing.

David cried during the examination.

Not because the diagnosis surprised him. By then, he had largely accepted what was happening.

He cried because somebody had finally listened.

The experience gave him a different understanding of the system he had spent his career trying to improve. He still believed in the principles he had advocated for. What changed was his appreciation of how difficult those principles can be to deliver consistently in real clinical settings.

Fear Is Still There

There is no attempt in David’s story to pretend that building something meaningful makes ALS less frightening.

He says plainly that he is terrified.

The fear of what is coming remains.

What building gives him is something to do with that fear.

Solving problems keeps it from becoming overwhelming. Developing the technology, advocating for other people with ALS, continuing to travel, and building something that may outlast him give him a direction to move toward even as physical movement becomes harder.

That may be the most important distinction in his story.

Technology cannot solve ALS.

It cannot remove the uncertainty of what comes next.

But it can preserve something the disease threatens to take.

A joke with a spouse.

A bedtime story for a child.

A thought expressed in a familiar voice.

A person remaining inside the conversation rather than being pushed outside it.

For David, that is what the technology is ultimately meant to protect.

Not simply speech.

Agency.

Identity.

And the ability to keep saying what still needs to be said.