What is ALS?
ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that impacts a person’s motor neurons.
Motor neurons send signals to the brain to initiate movement. Voluntary movements are things that a person chooses to do, such as walking or talking. When a person’s motor neurons degenerate, they lose the ability to control those voluntary movements.
There are two main forms of ALS: spinal ALS and bulbar ALS. Spinal ALS begins first in the limbs causing a person to lose control of their limb function. Bulbar ALS (the more rare form of the disease) first causes the person to lose control of functions such as swallowing or speaking.
Early symptoms include muscle stiffness or soreness, slurred speech, difficulty swallowing, or involuntary muscle movements (twitching). As the disease progresses, the person loses their ability to stand, walk, speak, and swallow. Many people with ALS will eventually depend on a feeding tube and a ventilator.
Someone battling ALS may or may not suffer cognitive changes at some point during the course of the disease. However, many people battling ALS will remain aware of their loss of function as the disease progresses, making anxiety and depression other common symptoms of ALS.
The disease is fatal because of its impact on breathing. Most people with ALS will eventually suffer respiratory failure and succumb to the illness. The life expectancy of someone with ALS is typically 3-5 years, although a small percentage of people can live for 10+ years after diagnosis.
As of today, there is no cure for ALS. There are very few treatment options and little to no understanding of how someone gets ALS.
Though ALS is a rare disease, many people are familiar with ALS because of Lou Gehrig (professional baseball player for the New York Yankees who retired after being diagnosed with ALS), Stephen Hawking (theoretical physicist who defied ALS and lived with it for 50+ years), and the ALS Ice Bucket Challenge which took the internet by storm in 2014.
FIND A CURE. END ALS.
ALS is very aggressive, making every moment shared with someone with ALS an important one. The disease progresses very rapidly, and many people with ALS will die in just a few short years while fighting until the very end. While the current treatment options may provide a little bit of symptom relief or slow the disease’s progression, we don't know what causes ALS in the first place and there is currently no cure.
Organizations like the Healey Center for ALS at Massachusetts General Hospital are working hard to change that. Since their founding in 2018 and thanks in part to support from the Joseph Kiley Foundation, the Healey Center has made remarkable progress in the development of new therapies.
HOW CAN I HELP?
By supporting the Joseph Kiley Foundation, you make it possible for us to support organizations like the Healey Center in their innovative research of ALS. With your help, we can continue to fund these organizations and ensure that no one has to feel the devastating effects of ALS ever again.
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The Joseph Kiley Foundation is not a healthcare or medical organization. If you have questions about ALS or suspect that you or a loved one may have ALS, we encourage you to consult your physician.