Understanding ALS

Some diseases present seemingly
impossible challenges. We strive to make a
difference in the lives of people living with
amyotrophic lateral sclerosis (ALS) by rising
to that challenge.



ALS was first discovered in studies conducted between 1865 and 1869 by French neurologist Jean-Martin Charcot.1 The condition became widely known in the late 1930s as Lou Gehrig’s disease with the diagnosis of the American baseball player bearing the same name.2

ALS is a progressive and incurable neurodegenerative disease. The majority of patients with ALS die within two to five years of diagnosis.3,4

ALS causes the motor nerve cells (motor neurons) in the spinal cord, brainstem, and brain to deteriorate and die over time. As the body’s motor neurons are responsible for stimulating muscles into action the degeneration of this disease leads to debilitating muscle weakness.3

Absence Muscle Nourishment
Side (referring to the spine)
Hardening or scarring

ALS is referred to as a progressive disease, meaning the symptoms continue to worsen over time. People with ALS lose strength in their muscles and become weaker, which can limit movement.3

Over time, the brain loses its ability to initiate and control certain muscle movements, resulting in progressive weakness and paralysis. People living with ALS may eventually need assistance with speaking, eating and breathing on their own.3


An ALS diagnosis can be devastating, not only for the person, but also for their families and caregivers. ALS impacts the whole family.

Eventually people with ALS may be unable to perform basic physical tasks, requiring a full-time caregiver (often a spouse or family member) to be present at all times. In the later stages of the disease, a person with ALS may be bed/chair bound, and may be on mechanical ventilation, requiring 24/7 professional assistance.3

~17 k

Americans have ALS4

~5 k

Americans are diagnosed with ALS annually4

90-95 %

have no family history of ALS3

Patient Resources
Understanding this disease

There are no easy answers with
ALS, and every person's experience
can be different.

Learn More
Fighting ALS Through Advocacy

Whether it’s a symposium, virtual walk or gala, our advocacy efforts have one common goal: improving the lives of those with ALS. Explore a sampling of our latest endeavors…

The Windy City played host to the Les Turner Symposium on ALS, which gathered the best and brightest ALS experts.
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We proudly sponsored the White Coat Affair Gala on Oct. 15th, where we celebrated ALS research.
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This Fall, participants closed their laptops and got on their bikes together for the 1st live Napa AL ride since Covid.
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  1. Kumar D, Aslinia F, Yale S, et al. Jean-Martin Charcot: The Father of Neurology. Clin Med Res. 2011 Mar; 9(1): 46–49.
  2. ALS Association. Lou Gehrig and the History of ALS. ALS.org. Accessed March 2023. https://www.als.org/understanding-als/lou-gehrig.
  3. National Institute of Neurological Disorders and Stroke. Amyotrophic Lateral Sclerosis (ALS) Fact Sheet. Accessed March 2023.
  4. Mehta P, Kaye W, Bryan L, et al. (2016). Prevalence of Amyotrophic Lateral Sclerosis in the United States using established and novel methodologies, 2017 Amyotroph Lateral Scler Frontotemporal Degener. 2023 Feb;24(1-2):108-116.