10/20/2026 BCI (Brain Computer Interface) Struggles

10/20/2026

Right now, Jacob’s entire voice is reduced to a single beep.

The only communication method we have relies on surface EMG sensors reading muscle signals from his right quad. At 27 years old, Jacob has so much to say, so much knowledge and personality to share with the world, but he is trapped behind technology that only gives him a binary signal.

We have spent the last few years desperately pursuing a Brain-Computer Interface (BCI) clinical trial to restore his ability to communicate, only to run into brick wall after brick wall built by rigid trial requirements:

Neuralink (Elon Musk): Disqualified him simply because he is enrolled in another trial for an ALS medication—even though his drug trial has zero technical or physical overlap with a neural implant.

Paradromics (Matt Angle): Disqualified him because he has a tracheostomy and relies on full-time mechanical ventilation. The tragic irony is that in ALS, the diaphragm frequently fails before total loss of communication; excluding ventilated patients virtually eliminates the very people who need neural interfaces the most.

Synchron (Bill Gates/Jeff Bezos): A cutting-edge avenue we were deeply hopeful for, but their trials are currently paused due to software setbacks, leaving no clear timeline for resumption.

Precision Neuroscience (Private Corp): One of our first and top choices given their minimally invasive approach, but their clinical trials are still over a year away from being ready.

This experience highlights a glaring systemic flaw in how assistive neurotechnology is being evaluated. BCIs hold life-altering promise, but exclusionary criteria are actively screening out the patients living in the greatest urgency. When trial protocols mandate that you must not be fighting the disease on any other front, or that your progression must stop short of respiratory compromise, they fundamentally miss the reality of ALS.

We are sharing Jacob’s story not just out of our own frustration, but to advocate for an urgent shift toward flexible, patient-centered clinical trial design. Technology must be designed and tested around the lived needs of real patients, not ideal laboratory conditions. Jacob deserves a voice—and so does everyone fighting this battle alongside him.