When actor Eric Dane, 52, best known for his roles on Grey’s Anatomy and Euphoria, recently revealed his diagnosis of Amyotrophic Lateral Sclerosis (ALS), the world took notice.=

Often referred to as Lou Gehrig’s disease, ALS is a progressive neurodegenerative condition that affects nerve cells in the brain and spinal cord, gradually impairing muscle function. While the condition is rare, its impact is profound — on both patients and the medical community striving to understand and treat it.

Early Symptoms That May Go Overlooked

ALS often begins quietly. “In many cases, patients first notice small changes — like muscle weakness in the hands, twitching in the arms or legs, or increased clumsiness,” explains Nestor Galvez-Jimenez, M.D., neurologist and director of the Autonomic Neurology Program at Baptist Health Miami Neuroscience Institute. “Eric Dane may have first experienced subtle speech changes or trouble gripping everyday items—signs that are easy to attribute to stress or aging.”

Other early indicators include:

·       Persistent muscle cramps or twitching.

·       Slurred speech.

·       Difficulty walking or maintaining balance.

·       Fatigue after simple physical tasks.

Because ALS presents differently in each person, many cases are diagnosed months after symptoms first appear — underscoring the importance of early clinical evaluation.

Nestor Galvez-Jimenez, M.D., neurologist and director of the Autonomic Neurology Program at Baptist Health Miami Neuroscience Institute

Advances in ALS Research and Treatment

Although there is currently no cure, ALS research has accelerated rapidly in recent years. Scientists now view the disease as far more complex than previously believed, involving not only motor neurons -- but also inflammation, mitochondrial dysfunction, and immune system interactions.

In 2023, the U.S. Food and Drug Administration (FDA) approved tofersen (Qalsody) for the treatment of ALS in adults with a genetic mutation in the superoxide dismutase 1 (SOD1) gene. Tofersen is the first drug approved by the FDA to specifically target a genetic cause of ALS.

“The real turning point has been in genetics and gene-targeted therapies,” said Dr. Galvez-Jimenez. “We now know that over 30 genes are associated with ALS. The approval of tofersen for SOD1-related ALS in 2023 was a landmark moment—offering personalized treatment for a subset of patients.”

Other promising developments include:

·       Antisense oligonucleotides (ASOs): Molecules that target disease-specific mutations.

·       Stem cell trials focused on slowing neurodegeneration.

·       AI-based drug discovery platforms accelerating novel therapy design via artificial intelligence.

As Dr. Galvez-Jimenez notes: “We’re closer than ever to changing the trajectory of ALS—not just managing symptoms but altering the course of the disease itself.”

Genetics and Environment

While about 10 percent of ALS cases are inherited, most occur without a clear family history. Yet even so-called sporadic cases may be influenced by underlying genetic susceptibility and environmental exposures. 

Confirmed risk factor:

·       Smoking

Additional potential risk factors: 

·       Repeated head trauma.

·       Exposure to pesticides or heavy metals such as lead.

·       Intensive physical exertion.

·       Exposure to air pollution.

·       Certain professions such as military service, professional athletics.

Svetlana Faktorovich, M.D., director of Neuromuscular Medicine and the Neuro- Infusion Center at Marcus Neuroscience Institute at Boca Raton Regional Hospital, part of Baptist Health

While there is no guaranteed prevention strategy, a proactive approach is encouraged, explains neurologist Svetlana Faktorovich, M.D., director of Neuromuscular Medicine and the Neuro- Infusion Center at Marcus Neuroscience Institute at Boca Raton Regional Hospital, part of Baptist Health.

“Avoid chronic toxin exposure where possible, and if you have a family history of ALS, consider genetic counseling,” said Dr. Faktorovich. “We're working toward a future where those at risk may one day receive early intervention.”

Living with ALS

An ALS diagnosis doesn’t just affect the body—it affects identity, relationships, and mental health. As physical function declines, daily activities like speaking, eating, and walking become challenging, eventually requiring assistive technologies and caregiver support.

“People living with ALS often experience anxiety, depression, and profound grief,” said Dr. Faktorovich. “That’s why comprehensive, multidisciplinary care is so essential—it’s not just about extending life but improving the quality of it.”

Critical resources include:

·       ALS clinics offering coordinated care.

·       Speech and occupational therapy.

·       Respiratory support (such as BiPAP machines to help push air into the lungs).

·       Peer support groups for patients and families. 

How You Can Help: Advocacy, Research, and Hope

Awareness raised by public figures like Eric Dane can do more than generate headlines—it can fuel momentum for funding, research, and policy change.

Here’s how individuals can make a difference:

·       Donate to organizations funding ALS research.

·       Participate in awareness events like the Walk to Defeat ALS.

·       Share stories to humanize the ALS journey and reduce stigma.

·       Advocate for policy change, including expanded research grants and access to experimental therapies.

ALS remains one of the most challenging neurodegenerative diseases—but it is not without hope. With continued research, collaboration, and public support, breakthroughs that can change lives are possible.

“We need every voice,” Dr. Galvez-Jimenez urges. “ALS may not incurable — but research is underfunded. Advocacy turns awareness into action, and action