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What You Should Know About ALS, Also Known as Lou Gehrig’s Disease

Medically reviewed by Drugs.com.

By Brian Lin, PhD, Research Portfolio Director at the Muscular Dystrophy Association (MDA) HealthDay Reporter

SATURDAY, May 3, 2025 — Amyotrophic lateral sclerosis (ALS) – known as Lou Gehrig’s Disease based on the iconic 1930s New York Yankee baseball player – is a progressive neurodegenerative disease that affects thousands of Americans every year. ALS remains one of the most complex and challenging disorders known to science.

May is ALS Awareness Month, making it an ideal time to take a closer look at this condition — who it affects, how it progresses and what efforts are underway to advance care, accelerate research and provide support to families across the country.

What is ALS?

ALS, according to the National Institutes of Health (NIH), is a disease that targets the motor neurons, nerve cells in the brain and spinal cord that coordinate voluntary muscle movement. As these neurons degenerate and die, the signals from the brain are unable to transmit messages to muscles, leading to muscle atrophy, weakness, paralysis and ultimately, respiratory failure.

People with ALS lose the ability to walk, speak, eat and breathe independently, though most ALS patients retain their cognitive abilities. ALS is a progressive disease and most people live two to five years after their diagnosis.

Its clinical presentation varies widely, and its progression can differ widely from person to person, making every individual’s experience with ALS unique. With expanding treatment options, there is growing hope for improving both quality of life and survival.

Who gets ALS?

Anyone can get ALS, according to the U.S. Centers for Disease Control and Prevention (CDC), though most people are diagnosed between the ages of 40 and 70. In the United States, about 5,000 new cases are diagnosed each year, and an estimated 30,000 people are living with the disease.

There are two main types of ALS:

Some groups are more likely to develop ALS than others. Military veterans are about twice as likely to develop ALS, regardless of their deployment history or branch service, according to the National Institute of Neurological Disorders and Stroke.

Possible reasons include environmental exposures, physical injuries or intense physical activity, though more research is needed to understand it fully.

Similarly, fire fighters are nearly twice as likely to be diagnosed with ALS, potentially due to on-the-job exposure to dangerous chemicals, smoke and other toxic materials. These trends highlight the urgent need for further research into occupational and environmental risk factors and the importance of expanding access to expert care for those who serve and protect communities.

While there is still much to learn, the U.S. Department of Veteran Affairs recognizes ALS as a service-related condition, meaning veterans with ALS are eligible for a wide range of benefits, including comprehensive health care services, disability compensation, adaptive equipment and more. The ALS Veteran Handbook has more specific information.

What are the symptoms?

ALS often begins subtly, and symptoms vary from person to person. Early signs can clinically manifest in a variety of ways and can be categorized into subtypes based on site of onset and motor neuron involvement. The Living with ALS report lists some of the most common symptoms, including:

Over time, these symptoms become more widespread. As motor neurons continue to die, people with ALS lose the ability to perform everyday activities and eventually require aid with breathing.

Respiratory symptoms may include dyspnea (breathless sensation) on exertion or at rest, orthopnea (shortness of breath while lying down), sleep-disordered breathing, and declining forced vital capacity, which is closely monitored as a marker of disease severity.

Although ALS predominantly affects motor neurons, up to 50% of patients experience cognitive or behavioral changes, and 10% to 15% develop frontotemporal dementia (FTD).

What causes ALS?

In most cases, the exact cause of ALS remains unknown, but genetics are believed to play a major role. In recent decades, researchers have identified nearly 50 genes associated with ALS, with the most common mutations occurring in the SOD1, C9orf72, TARDBP,and FUS genes, which disrupt normal nerve cell function.

In sporadic ALS, a complex mix of genetic susceptibility and environmental exposures is thought to be involved. Potential risk factors include exposure to certain toxins, heavy metals, viral infections, intense physical activity and traumatic brain injury.

More research is needed to fully understand these risks as genetics, age and other unknown variables may contribute to motor neuron degeneration.

How is ALS diagnosed?

Diagnosing ALS can be a lengthy and difficult process. Its symptoms overlap with other neurological disorders, and there is no single test that definitively confirms the diagnosis.

Doctors typically rely on a combination of tools, according to the Mayo Clinic, including:

ALS is also diagnosed by ruling out other potential causes of motor neuron dysfunction, a process that may include:

Early diagnosis is crucial for accessing therapies, enrolling in clinical trials and building a comprehensive care plan.

What treatments are available?

While there’s no cure for ALS yet, several therapies approved by the U.S. Food and Drug Administration can help slow disease progression. A recent review in Frontiers of Neurology noted these therapies are available:

ALS remains an active area of research with many therapies in clinical testing.

About 30 active interventional clinical trials in the United States are enrolling people with ALS to test potential therapies, according to clinicaltrials.gov. Worldwide, there are more than 120 active interventional trials.

In the United States, some ALS clinical trials are conducted through the HEALEY ALS Platform Trial, an innovative effort designed to accelerate development of treatments by evaluating multiple investigational therapies at the same time. To learn more about therapies under testing on the platform trial, visit the Healey ALS Platform Trial.

The state of ALS research

Despite extensive research, the exact causes of ALS remain unclear. But significant progress has been made to uncover genetic contributors, identify promising therapeutic targets and develop biomarkers that are critical for early diagnosis and intervention.

Some of the most exciting current developments in ALS research include:

With multiple clinical trials now underway and more therapies entering the pipeline, researchers are moving ever closer to meaningful breakthroughs.

Living with ALS

An ALS diagnosis can be overwhelming, but many individuals continue to work, advocate, write and inspire long after their diagnosis.

Through resources like the MDA Care Center Network, the MDA Resource Center, and other national advocacy groups, families can find information, clinical guidance and emotional support.

Assistive technologies such as eye-tracking devices, speech-generating tools and power wheelchairs can help individuals maintain independence and connection to the world around them.

The road ahead

ALS is a devastating disease — but progress is being made. Thanks to decades of tireless research, advocacy and support from organizations like the Muscular Dystrophy Association, the world is closer than ever to earlier diagnoses, better treatments and a future where ALS is no longer a life-ending diagnosis — but a manageable and ultimately, curable condition.

MDA’s role in ALS care and support

Over the past 75 years, the Muscular Dystrophy Association (MDA) has invested more than $178 million in ALS research, driving major advances in disease understanding and directly supporting the development of treatments, including riluzole and tofersen.

The MDA also operates the nation’s largest network of multidisciplinary neuromuscular clinics, including 47 designated MDA/ALS Care Centers. These clinics bring together neurologists, physical therapists, respiratory therapists, speech-language pathologists and social workers to provide comprehensive, coordinated care under one roof.

Research has shown that multidisciplinary care leads to longer survival and improved patient outcomes. It also helps patients maintain independence longer and navigate the many physical and emotional challenges that ALS presents.

The MDA Resource Center is a source for support and answers to day-to-day questions. lifeline. Families can contact trained specialists by phone or email for personalized guidance on navigating a diagnosis, finding local services and connecting with clinical trials and community resources.

How you can help

This ALS Awareness Month, you can make a difference by:

Brian Lin, PhD, is a research portfolio director at the Muscular Dystrophy Association, where he oversees investment in ALS and neuromuscular disease research.

Sources

  • Brian Lin, PhD, Muscular Dystrophy Association

Disclaimer: Statistical data in medical articles provide general trends and do not pertain to individuals. Individual factors can vary greatly. Always seek personalized medical advice for individual healthcare decisions.

© 2025 HealthDay. All rights reserved.

Posted May 2025

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