Understanding ALS
What ALS actually does.
This page is short on purpose. The ALS Association, the NIH and the Mayo Clinic maintain far better medical information than we could, and we link to them throughout. What follows is the honest version of what this disease is, and then where to go for help.
What is ALS?
Amyotrophic lateral sclerosis is a progressive neurological disease that attacks the motor neurons controlling voluntary movement. The ALS Association describes it as a disease in which "a person’s brain loses connection with the muscles, slowly taking away their ability to walk, talk, eat and eventually breathe." The name itself is a description: amyotrophic, no muscle nourishment; lateral, the region of the spinal cord affected; sclerosis, the scarring left behind.
How many people have it?
The CDC’s National ALS Registry estimates roughly 33,000 people in the United States were living with ALS in 2022, and projects more than 36,000 by 2030. The ALS Association puts the rate of new cases this way: every 90 minutes, someone is diagnosed, and someone dies of it.
How long do people live after diagnosis?
The National Institute of Neurological Disorders and Stroke reports that most people with ALS die of respiratory failure, usually within three to five years of symptoms first appearing. About one in ten live ten years or longer. Tim Shaw was diagnosed in August 2014.
Who gets it?
Most people diagnosed are between 40 and 70, with an average age at diagnosis of 55. It is about 20% more common in men. Roughly 90% of cases occur with no known family history or genetic cause. Tim was 30.
Why are veterans at higher risk?
NINDS reports military veterans are about one and a half to two times more likely to develop ALS, and the ALS Association puts it at nearly twice as likely regardless of branch or era of service. The cause is not understood. In 2008 the VA established a regulation presuming ALS in veterans to be service-connected, which makes veterans with ALS and their survivors eligible for benefits without having to prove causation.
Is there a treatment?
There is no cure. The FDA has approved several drugs that treat ALS or its symptoms, including riluzole, edaravone and tofersen; one previously approved drug, Relyvrio, was withdrawn from the market in 2024. Multidisciplinary clinical care meaningfully improves quality of life and survival, which is why getting into an ALS clinic matters.
Sources: The ALS Association, NIH / NINDS, CDC National ALS Registry, Mayo Clinic. Nothing on this page is medical advice. Talk to a neurologist.
Early symptoms
Mayo Clinic lists these among the first signs. They typically begin in the hands, feet, arms or legs before spreading:
- Trouble walking or doing usual daily activities
- Weakness in the legs, feet or ankles
- Hand weakness or clumsiness
- Slurred speech or trouble swallowing
- Muscle cramps and twitching
If any of this describes you, see a neurologist. Most of these symptoms are not ALS, but ALS is diagnosed by ruling other things out, and that process takes time you would rather not lose.
Why we fund research
ALS is rare enough that it does not attract commercial drug development on its own. It is charitable and public money that moves the field.
Tim describes this in concrete terms. He was enrolled in an ALS research study that had been funded for 20 participants. After the 2014 Ice Bucket Challenge, that same study could enroll 300.
That is the whole argument for a small nonprofit like this one. We are not going to cure ALS. We can make sure the people who might are not stopped by a funding gap.
Research does not fund itself.
TShaw Strong is volunteer-led. What we raise goes into ALS research and into the Middle Tennessee ALS community.
EIN 92-2550544