ALS Awareness Month: Why Understanding Matters

Since May 1992, people across the country have celebrated ALS Awareness Month to raise awareness, promote research, and support those affected by the disease. 

ALS stands for Amyotrophic Lateral Sclerosis. It is a progressive neurodegenerative disease that prevents muscles from receiving signals from nerve cells in the brain and spinal cord, causing a process called atrophy, in which nerve cells weaken and shrink. Over time, ALS weakens the muscles used for movement, speech, swallowing, and breathing. 

ALS currently has no cure, and most people live only two to five years after diagnosis—making awareness more critical than ever. Existing treatments and therapies can help slow disease progression and improve quality of life by managing symptoms. Increased advocacy helps drive the urgent research needed for new breakthroughs. 

History 

French neurologist Jean-Martin Charcot first formally identified it in 1869 after documenting symptoms associated with the disease in 1824. He defined ALS as a distinct condition, linking its symptoms to degenerating areas in the spinal cord.

Sometimes people refer to ALS as Lou Gehrig’s disease after the disease gained widespread recognition in 1939 when beloved baseball player Lou Gehrig—diagnosed with ALS just two years earlier at age 36—delivered his iconic farewell speech, often called “baseball’s Gettysburg Address,” to announce his retirement. Known as a powerhouse athlete, Gehrig’s visible physical decline brought national attention to the disease. Because ALS progressively weakens muscles, his condition gave the public a stark and deeply personal look at how devastating the illness can be. 

In 1993, researchers discovered that mutations in the SOD1 gene contribute to familial ALS, marking a major breakthrough in understanding the disease’s genetics. 

ALS Symptoms and Diagnosis 

Only 5–10% of ALS cases are familial or stem from an inherited gene, while 90–95% are sporadic, meaning the cause is unknown. The disease looks different in everyone, but identifying symptoms early can help slow progression and ease symptoms. ALS often begins with gradual muscle weakness, which is typically painless but can appear in these ways: 

• tripping 

• slurring words or slow speech 

• muscle fatigue or trouble walking 

• dropping things 

• uncontrollable laughing or crying 

ALS Treatment 

Following the SOD1 discovery in 1993, the Food and Drug Administration (FDA) approved Riluzole as the first treatment for ALS. This benzothiazole drug reduces nerve damage by decreasing glutamate levels; however, its impact on extending survival remains modest. 

In 2017, the FDA approved Edaravone (Radicava). It reduces oxidative stress, which can damage nerve cells. 

In 2023, the FDA approved Qalsody to treat mutations in the SOD1 gene, helping improve symptoms and slow disease progression. 

Therapy options—including physical and occupational therapy, as well as speech and respiratory therapy—can also help improve motor function and better manage symptoms associated with ALS. 

ALS Awareness 

In addition to ALS Awareness Month, there are other days and events supporting ALS research and awareness. Since 2021, the Major League Baseball (MLB) celebrates June 2nd annually as “Lou Gehrig Day” across the country in the ALS community and at MLB stadiums. The day raises funds for research for the disease.  

Ice Bucket Challenge  

In 2014, a social media campaign called the “Ice Bucket Challenge”went viral. Three young men—Anthony Senerchia, Pat Quinn, and Pete Frates, all diagnosed with ALS—founded the movement, which quickly gained traction that summer. The challenge encourages participants to post a video of themselves pouring a bucket of ice water over their heads or donate $100 to the ALS Association, then nominate others to take part. Since 2014, the challenge has raised over $100 million. This movement reached global fame, with more than 17 million people participating, including celebrities. 

Organizations Supporting ALS 

The ALS Association is the largest non-profit organization in the US that supports global ALS research, provides critical care services for individuals and families affected by ALS, and advocates for public policies that advance treatment, access, and awareness. The organization’s website offers a wide range of reliable resources and educational information for patients, caregivers, and the public. 

I AM ALS was founded by Brian Wallach and his wife after his ALS diagnosis in 2019, the same day they brought their daughter home from the hospital. The organization supports individuals with ALS and their families while advocating research, policy change, and community driven action. Its website offers ways to get involved and connect with local events and support networks. 

Can you get disability if you have ALS? 

An ALS diagnosis can be devastating. In addition to confronting a terminal illness, many people worry about losing the ability to work and provide for their families, which can create overwhelming fear and anxiety. Social Security Disability Insurance (SSDI) is a federal program regulated by the Social Security Administration (SSA) that provides financial assistance to individuals who cannot work for at least 12 months or have severe conditions expected to result in death and who have paid into Social Security through the FICA payroll tax. 

As soon as your doctor informs you that you can no longer work, you should apply for SSDI benefits. 

ALS is a listed condition listed under Section 11.10 of the SSA Blue Book (Neurological – Adult). Since 2001, the 24-month waiting period for Medicare coverage for individuals with ALS who are applying for SSDI benefits is waived.  

However, the SSA imposes a five-month waiting period on individuals it approves for benefits, during which it does not issue payments for the first five months following the Established Onset Date (EOD). While limited exceptions exist—such as compassionate allowances or expedited claims for terminal illnesses—many applicants still face delays. 

Because ALS is fatal and the average life expectancy after diagnosis is two to five years, advocates argued for years that the SSA should automatically approve ALS applicants and eliminate the five-month waiting period. Delays in accessing financial support and health insurance can create significant hardship, forcing some individuals to forgo medical treatment that could slow progression, ease symptoms, and provide needed support during adjustment. 

After years of advocacy from the ALS community, in December 2020, the ALS Disability Insurance Access Act was put into place that waives the SSA’s five-month waiting period before approved applicants can get benefits and Medicare. Additionally, it ensures that ALS claims are processed more quickly, helping applicants access critical support as soon as possible. 

Fierce Advocacy  

A serious diagnosis can make the future feel uncertain and overwhelming, as if your options have suddenly narrowed. An ALS diagnosis can be devastating, but you are not alone. There are organizations devoted to supporting individuals and families, offering access to community, resources, and treatment options, as well as government programs that can help ease the financial burden. 

At Nyman Turkish, we understand the weight of this moment and approach every client with care, compassion, and respect. As a leading disability firm, we are proud of our proven results and unwavering commitment to advocating for those we serve. 

If you need help with your claim, visit our website or call 877-529-4773 for a FREE case review. We are here to help!