ALS Awareness Month

May is recognized as ALS Awareness Month in the United States. This annual observance is dedicated to raising awareness about Amyotrophic Lateral Sclerosis (ALS),also known as Lou Gehrig’s Disease. The month focuses on education, sharing the experiences of those affected by ALS, supporting caregivers, and advancing diagnosis, treatment, and research efforts aimed at finding a cure.

The Symbol: Blue Cornflower

The blue cornflower is the official symbol for ALS and Motor Neuron Disease (MND) awareness. This resilient flower stands for the remarkable strength and hope of patients facing the challenges of ALS and MND.

What Is ALS?

ALS is a severe neurological condition with no current cure. Researchers are developing medications to slow the disease’s progression and improve patient comfort. The Cleveland Clinic describes ALS as a disorder affecting communication between the brain and muscles. Typically, the brain sends nerve signals—like phone calls—through motor neurons, instructing muscles to move. In ALS, these “wires” deteriorate, preventing the muscles from receiving instructions. As a result, muscles weaken and lose function.

Symptoms and Progression

Symptoms often start subtly, such as difficulty buttoning a shirt or lifting a pen, tripping, or slightly slurred speech. Over time, the brain loses control over voluntary movements, and symptoms worsen, impacting essential functions like chewing, swallowing, and breathing. Although ALS impairs physical abilities, it was traditionally thought it does not affect thinking, learning, or feeling. However, up to 50% of people with ALS experience changes in cognition or behavior. The disease’s seriousness and progression can also lead to anxiety, depression, and stress for patients and their families. In terms of disease progression, according to the National Institute of Neurological Disorders and Stroke, most people with ALS die from respiratory failure within three to five years of symptom onset, but about one in ten may survive ten years or more.

ALS Risk Factors

The National Institute of Neurological Disorders and Stroke (NINDS) identifies several risk factors for ALS. A risk factor is a characteristic or behavior that increases the likelihood of developing a health problem. Having a risk factor does not guarantee the disease will occur – and not having one does not mean it won’t. Three primary risk factors identified by NINDS include:

• Age: Symptoms most commonly appear between ages 55 and 75, though ALS can develop at any age.
• Biological sex: Men are slightly more likely than women to develop ALS, but this difference lessens with age.
• Race and ethnicity: Non-Hispanic white people are more likely to develop ALS, but it affects individuals of all backgrounds.

Most ALS cases are sporadic, occurring randomly without clear associations like family history. Only about 10% of ALS cases are believed to be familial (inherited or genetic).

According to I AM ALS, military veterans may be one and a half to two times more likely to develop ALS. The reasons are unclear, but possible factors include exposure to toxins like lead and pesticides. Head injury may also be linked to higher risk, though further research is needed. No one knows what causes most cases of ALS.

Diagnosis and Testing

Currently, there is no single test for ALS diagnosis. Per ALS Association, on average it takes 10 to 15 months from the time a person first notices symptoms to receiving an ALS diagnosis.  Physicians rely on neurological evaluations, muscle tests, and imaging studies to rule out other conditions and confirm ALS. For instance, Magnetic Resonance Imaging (MRI) provides detailed views of the brain and spinal cord, while Electromyography (EMG) assesses nerve and muscle function.

Treatment and Quality of Life

While ALS cannot be reversed, available treatments can slow its progression and enhance quality of life for patients.

Lou Gehrig’s Legacy

Lou Gehrig, for whom ALS is also named, was a renowned baseball player for the New York Yankees, known for his outstanding hitting and durability. Despite numerous injuries, he played for 17 consecutive years, earning the nickname “The Iron Horse.” Diagnosed with ALS at age 36, Gehrig experienced symptoms such as loss of coordination and strength on the field. He retired in 1939 and was celebrated for his sportsmanship, famously referring to himself as “the luckiest man on the face of this earth.” In his famous July 4 speech, he echoed these words, “So I close in saying that I may have had a tough break, but I have an awful lot to live for.” Gehrig’s story brought visibility to the illness and is a significant part of ALS history not to be forgotten.

Why ALS Awareness Matters

ALS awareness campaigns are vital for advocating funding, driving the search for a cure, and supporting diagnosed patients. These campaigns educate the public, promote care policy advocacy, and encourage community support to address the physical, emotional, and financial challenges faced by those living with ALS and their caregivers.

Organizations Supporting ALS

Valuable organizations, including the ALS Association, I AM ALS, and the ALS Therapy Development Institute, provide resources for events, fundraising, personal stories, and information about ALS. Their websites offer ways to get involved, such as participating in May and other events, creating fundraisers, and contributing financially to research. These organizations explain how the generous support of donations aids in vital research, emphasizing the urgency of advancing science to save lives. They also offer details about challenges, conferences, events, and programs designed to provide ongoing support to those affected by ALS.

ALS Awareness Month: A Vital Initiative

In the U.S., approximately 5,000 to 6,400 people are newly diagnosed with ALS per year. Globally, the incidence of ALS is about 1.7 to 2.2 new cases per 100,000 people annually. Many of these individuals are blindsided by this serious and unexpected diagnosis. However, hope exists. ALS Awareness Month in May offers a meaningful opportunity to learn about this progressive neurodegenerative disease, which currently has no cure. It highlights the importance of attention, recognition, and action in the effort to save lives. Getting involved in this important initiative shows people with ALS that you care and are with them in the drive for a cure.

Disclosure: This article is for informational purposes only and is not medically reviewed. It does not constitute or replace medical advice.