Just ask and ALS patients will tell you what we want: a cure

It's crucial to stay focused on what matters most to our community

Dagmar Munn avatar

by Dagmar Munn |

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One important habit I enjoy doing every day is keeping up with the latest ALS-related news and research. But every once in a while, I come across an article that has me muttering, “Was this research even needed?” And more often than not, I answer my own question with, “Well, no.” The researchers could’ve just asked me or any other ALS patient for our opinion.

What pushed my buttons was reading about a recent two-year study that found that many ALS patients and their relatives experience anxiety and depression after a diagnosis. Really?

Plus, I knew this study was just one more in a long line of variations on the same theme, published over and over. Several years ago, I wrote about this same topic. In it, I referenced several studies dating back to 2005, all looking at the possible association between anxiety-depressive disorders and ALS. Really?

Why are medical experts still trying to figure out if ALS causes patients to feel negative emotions, especially when concise and useful resources on the subject are already available?

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What we want

What do ALS patients want? My advice: Don’t guess; ask us and we’ll gladly tell you.

An excellent example of asking is the recent survey that ALS News Today reported on in “Survey offers look at life, treatment priorities of those living with ALS.”

Even though the survey represented ALS patients from nine European countries, I believe similar results would be found in the U.S.

Among the many insights shared in the survey, this statement stood out to me: “When asked about what they valued more about current and new treatments, most patients wanted therapies that could stop disease progression.”

In other words, the next best thing to a cure.

Looking forward

While this past year brought us improved ALS treatments, support services, and increased focus on mental health, let’s continue to keep our focus on the goal: a cure for ALS.

I believe it’s possible. I look forward to the day when I read the grand announcement that there will be a world without this disease.

While we wait for that day, let’s help each other learn to live well while we’re living with ALS.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.


renlin xia avatar

renlin xia

without understanding the pathology, it is hard to find a cure, unfortunately

Dagmar Munn avatar

Dagmar Munn

You bet it is Renlin. That's why I'm advocating to focus more research dollars and energy in that direction rather than duplicate existing work in other areas.

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