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.
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| Dagmar Munn ALS Wellness Blog |
"ALS is here. But so are we."
IAM ALS (
A version of this post first appeared as my
column on the ALS News Today website.