A New Hope for ALS? Dr. Fred Grossman on an Experimental Treatment That Could Slow the Disease

Three patients with ALS showed no decline on a key functional rating scale over six months of experimental treatment. Now, a larger clinical trial could help determine whether those remarkable early results represent a genuine medical breakthrough.

For people living with amyotrophic lateral sclerosis (ALS), time is everything. The progressive neurological disease gradually destroys the nerve cells responsible for voluntary movement, affecting a person's ability to walk, speak, eat, and eventually breathe. Despite decades of research, there is still no cure.

But an experimental treatment being developed by Coya Therapeutics is offering a possible new approach.

In this episode of Nothing Left Unsaid, former NFL player and ALS advocate Tim Green, alongside his son Troy, speaks with Dr. Fred Grossman of Coya Therapeutics about encouraging early results, the science behind the treatment, and the difficult balance between giving patients hope and ensuring that treatments are proven safe and effective.

Four Patients, One Remarkable Observation

One of the most striking moments in the conversation comes when Dr. Grossman describes the results of an early study involving four people with ALS.

ALS progression is commonly measured using the ALS Functional Rating Scale, which tracks a patient's ability to perform everyday activities. As the disease advances, scores typically decline, although the rate varies considerably between individuals.

Grossman explains that after six months of treatment, three of the four patients experienced no decline on the scale. The fourth patient initially declined before stabilizing.

After a full year, the group's average functional score remained close to its starting point.

For a disease characterized by progressive loss of function, these observations are encouraging.

But Grossman is careful about what they mean.

Four patients are not enough to demonstrate that a treatment works. ALS progression varies naturally, and a small study cannot reliably distinguish a treatment effect from other explanations.

That is why Coya has conducted a larger, randomized clinical trial involving 120 participants, designed to determine whether the initial findings can be replicated.

Could the Immune System Be Making ALS Worse?

The treatment takes a different approach from therapies that attempt to address specific genetic abnormalities associated with ALS.

Instead, it focuses on the immune system and the inflammation believed to contribute to nerve cell damage.

Grossman explains that people with ALS can have impaired regulatory T cells, often called Tregs. These specialized immune cells help control inflammation and prevent the body's immune defenses from causing excessive damage.

When this regulatory system becomes dysfunctional, inflammation can remain elevated, potentially contributing to the deterioration of motor neurons.

Coya's experimental treatment combines two existing biological medicines:

Low dose interleukin 2 (IL 2) is intended to increase the number and function of regulatory T cells.

Abatacept is intended to reduce inflammatory activity, creating conditions in which those regulatory T cells can function more effectively.

The goal is not to shut down the immune system but to restore a healthier balance.

Grossman emphasizes that the treatment is not designed to cure ALS or reverse existing damage. Its objective is to slow or potentially stop further progression.

For someone recently diagnosed with ALS, preserving the ability to walk, use their hands, or maintain independence could have an enormous impact on quality of life.

Why Early Treatment Matters

During the conversation, Troy recalls one of the first signs of his father's ALS: difficulty cutting his fingernails.

It was a small change, but one that marked the beginning of a devastating progression.

Grossman explains that this is precisely the stage at which the experimental treatment might offer the greatest benefit.

By intervening before significant nerve damage has accumulated, researchers hope to preserve existing function for as long as possible.

But Tim asks a more difficult question.

What would a successful treatment mean for someone like him, already living with advanced ALS?

Grossman acknowledges that the treatment would not restore abilities already lost. Whether it could meaningfully slow progression in advanced disease remains uncertain and would require further investigation.

The exchange highlights an uncomfortable reality of medical research: a therapy that could transform the future for newly diagnosed patients may arrive too late to reverse the losses experienced by those who have already lived with the disease for years.

When Patients Cannot Afford to Wait

Perhaps the most emotionally significant part of the interview comes when Tim asks Grossman to imagine a patient sitting across from him.

"I'm willing to take any risk because I don't have time to wait."

Why, Tim asks, should that patient be denied access to a potentially promising treatment?

Grossman explains the dilemma facing researchers and regulators.

Early findings can generate legitimate hope, but treatments that have not been adequately tested may ultimately prove ineffective or cause harm.

The responsibility of researchers is to establish that a treatment genuinely benefits patients before making it widely available.

Grossman says that if the larger clinical trial demonstrates effectiveness, Coya intends to pursue a potential compassionate use program that could allow eligible patients to access the therapy through their physicians.

For now, however, the evidence remains incomplete.

The exchange illustrates one of the hardest questions in medicine: How do you balance the urgency of patients running out of time against the need for reliable scientific evidence?

What Happens Next for Coya's ALS Treatment?

Coya's larger clinical trial evaluates two treatment schedules against a placebo group, with patients receiving the combination either once or twice per month.

Researchers are measuring changes in ALS functional scores alongside biological markers associated with nerve injury and inflammation.

According to Grossman, initial results are expected in the second quarter of 2027.

If the data demonstrate meaningful clinical benefits and an acceptable safety profile, the company plans to work with the FDA toward potential regulatory approval.

The experimental treatment has already received FDA Fast Track designation, which is intended to facilitate the development and review of therapies addressing serious medical conditions and unmet needs.

However, Fast Track designation is not evidence that a treatment works, nor does it guarantee approval.

The findings from the larger clinical trial will therefore be critical in determining what happens next.

More Than a Scientific Experiment

Beyond the clinical research, the conversation reveals what motivates Grossman personally.

After spending much of his career developing treatments for psychiatric conditions, he was considering moving away from pharmaceutical research when he encountered Coya's approach to ALS.

The scientific rationale caught his attention, but so did the people affected by the disease.

Grossman describes the determination of patients, families, researchers, and advocates who continue working toward better treatments despite repeated setbacks.

He also offers a deeply personal acknowledgment of Tim's advocacy, telling him that sharing his experience with ALS has helped motivate the scientific community.

For Tim, who continues to use his voice and platform to raise awareness of the disease, the recognition is especially meaningful.

It is a reminder that progress in medicine is driven not only by scientists and pharmaceutical companies but also by the people whose lives depend on that progress.

Hope Is Important. Proof Matters More.

There is still no evidence from a large controlled trial establishing that Coya's experimental treatment can stop ALS progression.

The early results offer a reason for further investigation, not a guarantee of success.

But the possibility of preserving function, extending independence, and giving people with ALS more time makes the research profoundly important.

Throughout this conversation, Tim, Troy, and Dr. Grossman explore what it means to pursue a medical breakthrough when every day matters.

It is a discussion about science, uncertainty, perseverance, and the human cost of waiting.

Watch the full episode of Nothing Left Unsaid with Tim Green, Troy Green, and Dr. Fred Grossman to hear the complete conversation about the future of ALS treatment and the search for answers.

Medical note: The treatment discussed in this episode remains experimental. Early clinical observations do not establish efficacy, and the therapy has not been approved by the FDA for treating ALS.