Looking back on the progress (really!) in ALS awareness

 

It’s time to fill the balloons, hang the streamers, and invite our friends and family to join us for a summer full of fun ALS awareness events! Did you know that we’re also celebrating 34 years since May was designated as ALS Awareness Month and that 2026 is the 12th anniversary of the Ice Bucket Challenge, a fundraising campaign that spread the word about the disease?

Wait. What? Why do we still need to raise awareness about ALS and money for research? Hasn’t anything improved?

I’ll admit that I ask myself those same questions every May, especially because I live with ALS. But even though I’ve witnessed the slow progress of ALS research and the continued lack of awareness among the general public, I still have hope. I still do my part to help support the ALS community. If you’ve ever felt the same disappointment and wondered why, read on. I hope to change your mind.

The elusive cure

When I received my ALS diagnosis in 2010, I felt indignation when I learned that the cause and cure of ALS had continued to baffle medical experts. I thought to myself, “If they can put people on the moon, why can’t they cure ALS?”

I’ve since realized that a moon trip is traveling from point A to point B, whereas finding the cure for ALS is like standing on point A, but the target is invisible. Our body’s intricate nervous system, DNA, and immune system continue to remain a challenge. But I know that researchers are getting closer, even enlisting artificial intelligence to help speed things up.

Most patients are surprised to learn they have ALS. I know I was. I hadn’t heard of the disease before that, even though I’d spent nearly 30 years working in healthcare. Sadly, the lack of general awareness is pretty much the same today. But the big change happened on the internet.

During my first year with ALS, I searched in vain for helpful online information about the disease. Now, whenever a newly diagnosed patient Googles “ALS,” a door opens, and they step into a world of online associations, resources, webinars, and social support. It’s proof that ALS fundraising efforts do pay off.

Maybe we haven’t yet discovered the holy grail of a cure for ALS. But pulling back to look at the big picture, we can agree that progress is being made.

How you can help

Opportunities are everywhere. A good start is the events listed in a May 1, 2024, article on this site titled “Answering the call for advocacy during ALS Awareness Month.” Or an updated article (2026) on the same site: “Seeking to harness ‘real momentum’ is goal of this year’s ALS Awareness Month.”

How about making personal connections outside of the ALS community? Invite a friend to attend an ALS event with you. Start a conversation. Here are three easy topics:

• How ALS has affected your life.
• How the ALS community helped you.
• Something you wish more people understood about life with ALS.

I know it’s hard to speak up and talk about a disease. It takes gumption to tell your story. But we need you. ALS doesn’t stop, and neither should we.

Together, we can create a world where we can live well without having to live with ALS.

_______________________

Dagmar Munn
ALS Wellness Blog

"ALS is here. But so are we."

IAM ALS (https://www.iamals.org/)

 

 A version of this post first appeared as my column on the ALS News Today website.