Ten years ago, millions of people were pouring buckets of ice water over their heads and challenging friends to do the same on social media. The Ice Bucket Challenge generated priceless awareness of the disease known as ALS. It also raised millions of dollars for research.

ALS, which stands for amyotrophic lateral sclerosis, is a progressive fatal neurodegenerative disease. ALS was formerly known as Lou Gehrig’s Disease after the famous baseball player who was diagnosed with the disease at age 36. ALS is diagnosed in about 5,000 people each year.

“It may be a relatively rare disease, but it’s one that you should know about,” says Dr. Cristin Trecroce, a physician and medical director with BlueCross BlueShield of Tennessee. “The more people know about it, the more support they can offer to efforts to find a cure.”

What we know about ALS

Dr. Trecroce: ALS causes nerve cells to degenerate in the spinal cord and brain, affecting both nerve and muscle function. When the nerve cells wither and die, they can’t send messages to the muscles that are responsible for voluntary movements anymore. The muscles begin to weaken, twitch, and waste away. It will affect the ability to walk, move, eat, and eventually even breathe.

Early signs of the disease include:

• muscle twitches
• cramps
• weakness
• slurred speech
• difficulty swallowing or chewing food

Because it’s a progressive disease, it will get worse over time.

Experts still don’t know a lot about what causes ALS. We do know that the average age of diagnosis is 55 years, but it can develop at any age. Men are slightly more likely to develop ALS. It affects people across all races and ethnic groups.

Currently, we know that there are two main types of ALS:

• Sporadic: responsible for about 90% of the ALS cases in the U.S.
• Familia: a hereditary form of the disease. Genetic research is finding that familial cases may be more common than once thought.

No definitive diagnostic test exists for ALS right now. Usually, a whole series of tests are needed.

There is no cure for ALS at this time. Treatments can slow down the progression of the disease and may even extend your life. They include:

• Rilutek (riluzole), an oral medication that’s been around for nearly 30 years.
• Radicava (edaravone), an infusion therapy approved by the FDA in 2017.
• Tofersen (Qalsody), a spinal injection to given people who have a mutation in the SOD1 gene.

If you develop symptoms that worry you, don’t wait to talk to your doctor. Treatment seems to be more effective when it’s started early.

What the future holds

Dr. Trecroce: Researchers are learning more about ALS every day. Scientists are studying possible gene mutations that may lead to some cases of ALS. They’re also investigating possible drivers of ALS, such as epigenomic factors in cells. And, they’re exploring biomarkers to develop better diagnostic testing.

Clinical trials may lead to the creation more effective treatments for ALS in the future.

What you can do

Dr. Trecroce: A few years ago, Congress created a national registry for people with ALS. It collects vital information about ALS, and the information can be used to help others. More research is needed, and the more people advocate for research, the better. You can help by staying current on the news about ALS and helping to keep the issue on people’s minds. You can also find information about clinical trials on the CDC registry.

“We do know more about ALS and how to help people with ALS than we used to,” says Dr. Trecroce. “There’s still a lot of work to be done. We can help by supporting efforts to raise awareness of the disease and contribute to funding for research.”

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