For decades, the conversation around ALS treatment has been centered on one word: slowing. We’ve looked for ways to slow the decline, slow the loss of muscle control, and slow the inevitable. But a small biotech company called Spinogenix is using a very different word: regeneration.

Recent top-line results from their Phase 2a trial of a drug candidate called SPG302, now officially named tazbentetol, have caught the attention of the global ALS community as a first-in-class synaptic regenerative therapy.

The Science: Healing the “Handshake”

To understand why SPG302 is different, you have to look at the synapse. Think of your nervous system as a vast network of wires. In ALS, the wires (motor neurons) eventually die, but long before they disappear, the connections between them, the synapses, wither away. It’s like a handshake between two people slowly losing its grip until they can no longer communicate.

Most ALS drugs try to simply keep the neuron alive. SPG302, however, is a once-daily pill designed to trigger the growth of new synapses. By restoring these “handshakes,” the drug aims to repair the communication lines between the brain and muscles, potentially restoring functions that were thought to be lost. Casey still has synapses that could be saved, and this trial offers hope that his disease progression could be significantly slowed.

The Breakthrough Results

In the Phase 2a study (NCT05882695) involving 23 participants, the data presented at the late-2025 NEALS Annual Meeting was striking:

• Patients treated with a 300mg daily dose of SPG302 showed a 76% slower rate of decline in functional ability (measured by the ALSFRS-R scale) over six months compared to historical controls from the PRO-ACT database.

• Remarkably, 82% of patients saw their disease progression stabilize or even improve by the end of the treatment period.

• Objective EEG tests showed that the drug helped “normalize” brain patterns that are typically distorted by ALS.

• The drug was well-tolerated with no treatment-related serious adverse events reported over the six-month dosing period.

What’s Next?

Following these successful results, Spinogenix is beginning registration-directed trials, which is how Casey is gaining access to the drug. Meanwhile, The FDA has granted Fast Track and Orphan Drug Designation to tazbentetol for the treatment of ALS, to accelerate development.

For those who cannot wait for the full trial process, there is significant hope: the FDA has authorized an Expanded Access Program. This allows up to 200 ALS patients in the United States who do not qualify for formal clinical trials to access tazbentetol. This compassionate use program signals a high level of urgency from both the company and regulators to get this regenerative therapy to the community.

We’re still in the early chapters of the SPG302 story, but for the first time, the word “regeneration” isn’t just a dream. In the same way that Casey has applied his grit, determination, and focus to become a pioneer of brain-computer interface communication, we expect to see him become a pivotal participant in this groundbreaking medical trial.

Further Reading:

https://spinogenix.com/press-release/spinogenix-presents-topline-phase-2a-clinical-trial-results-for-spg302-a-first-in-class-als-treatment/

https://clinicaltrials.gov/study/NCT05882695

https://www.the-scientist.com/regenerating-synapses-could-help-treat-neurodegenerative-diseases-74149

https://alsnewstoday.com/news/als-treatment-tazbentetol-fda-fast-track-status/

For a number of years now, my life has been changing in ways I never could have imagined.

In the summer of 2019, after the joy of welcoming my daughter, Aya, into the world, I began to notice a shift in my physical abilities. It started with a subtle difference in how I walked. I had been an active runner and former college athlete, but soon I began to struggle just to hold my daughter in my arms. After months of inconclusive tests, in May of 2020 I was diagnosed with ALS (Lou Gherig’s Disease), a progressive neurological disease that gradually took away my ability to control my muscles and eventually my ability to speak.

Before this diagnosis, my life was defined by my voice and my work for the planet. As a climate strategist, I was leading campaigns to push the world’s largest asset managers to acknowledge climate risk in their portfolios, and to change their practices accordingly. I was prone to monologue, to engage in late-night policy debates, and to deliver pressure, often vocally, to those in power. ALS is brutal in so many way, but for me, not being able to communicate was the most devastating. As I lost my ability to speak, I felt trapped. I could no longer sing to my daughter or engage in the kind of conversations that I thought made me who I was.

Since then, I’ve been on a journey to reclaim my presence in the world. I refuse to let this disease extinguish my voice. I’m not just a victim of ALS. I’m a cyborg on a mission.

The Breakthrough that Gave Me a Voice Again

Three years after my diagnosis, I was humbled and grateful that I was beating the odds, clearly outliving the short prognosis I’d been given. But life became increasingly painful and isolating as I fully lost my ability to move, and with it the ability to control my vocal apparatus. My wife Levana could still decipher many of the sounds I was making after others could not, but eventually I was all alone, relying entirely on eye-tracking technology to slowly type out messages one letter at a time.

Then in 2023, I became a participant in a clinical study of the BrainGate2 Neural Interface System administered by researchers at UC Davis. First, they drilled two holes through the top of my skull and implanted tiny micro-electrode sensor arrays into the speech centers of my brain. At the first speech data training session, it took me just 30 minutes to achieve 99.6% word accuracy with a 50-word vocabulary. I cried tears of joy and relief, as did my wife and practically everyone else in that room. I had hope again, not just for me but for the countless others who need this technology for themselves.

Here’s how it works: the system reads my neural activity when I attempt to move my muscles to speak. Then it translates those signals, first into phonemes, then words, then sentences which are made audible through a model of my voice trained on old recordings. This technology is a total breakthrough for me, enabling me to say what I want to say, when I want to say it. I’m able to communicate in real-time with my family, friends, and colleagues again. As of now, I’m the first human on Earth to communicate daily through a brain-computer-interface that translates my intention to speak into speech. With how I’m using this technology, it might accurately be described as the world’s first Brain-Family Interface.

You can read more about my story in The New York Times, Scientific American, and Science Magazine.

Part Progress, Part Paradox

This groundbreaking neuroprosthetic research, while enormously empowering, has not come without its challenges. As the keystone patient in this study, I spend over 70 hours a week plugged into a bank of computers, training the system with my brain. It is grueling work. But, so far it’s felt worth it, to be a pivotal piece of this pioneering effort to restore the most vital human faculty to those who’ve lost it.

The incredible team of researchers responsible for this work have received a bevy of prestigious international awards (here, here, here, and here). These honors recognize how our work together is fundamentally reshaping the future of neuroscience and patient care. However, because of conflict-of-interest rules, the subjects of studies, like me, are barred from receiving any of the financial benefits granted through these awards.

Meanwhile, surviving ALS is horrifically expensive. The national average annual cost of care is $300,000/year on top of normal living expenses. Most families enter hospice simply because the price of staying alive is out of reach. It’s extremely rare for a family like ours – without the wealth to afford a full-time medical staff – to reach year seven of ALS. The health care system in the U.S. all but guarantees that those living with ALS must bankrupt themselves before getting meaningful aid. While science moves forward and institutions are rewarded, my family and I must fundraise for our basic survival.

The Journey Ahead

I’m still fighting every day for my own health, my own voice, and for the hundreds of thousands of others who also deserve a future with connection. There are so many important questions facing this new field, and I believe that my lived experience can provide a basis for leadership on how we navigate them equitably.

If BCIs become the standard for enabling communication for patients with locked-in syndrome, will they be considered a human right or a luxury?

Political leaders must decide if insurance or public health systems will cover the cost of these devices.

What happens if the company that made your brain implant goes bankrupt? How can we prevent technological abandonment, where patients can no longer update or repair the software they rely on for basic movement or speech?

Who owns the neural data recorded by the device?

As big AI players like Elon Musk’s Neuralink advance their vision for consumer-focused BCIs to create “enhanced human-AI symbiosis” how can the disabled community keep our seat at the cyborg table?

Casey the activist is still here. With 27 years experience working in advocacy and campaign strategy, I feel uniquely positioned to pressure the emerging AI industry to adopt ethical and environmental standards, and to ensure these technologies are being developed to benefit disabled people. And I’m not alone. Team Casey is a group of friends, family, and colleagues who have organized around me and my cause. Together, we are dedicated to ensuring that no one is left behind by the progress we help create.

Please join us.

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Casey’s survival currently relies on someone who can barely keep her eyes open. Avoidable medical emergencies keep happening because we simply do not have enough care. All of this threatens not just our family, but the continuation of Casey’s activism and groundbreaking speech neuroprosthetics research. If you are able to make a donation of any amount, it makes a huge difference.

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