Let’s turn ALS Awareness Month into a year-round movement

May is coming to a close, but we can keep the momentum going

James Clingman avatar

by James Clingman |

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As I read my daily emails and text messages, I think of my condition and what ALS Awareness Month means to me. How does it make me feel? What can I do to enhance the effects of this special month? Like the Ice Bucket Challenge, what is its real significance vis-a-vis ALS?

May brings so many activities and events, so much more awareness, and such a heightened interest in creating excitement and enthusiasm about ways to ameliorate some of the issues faced by ALS victims. I love it. Thanks to everyone who continues to participate.

In the relatively short period of one month, collectively we can accomplish a great deal. But stopping our efforts after 31 days minimizes the progress we could make. I fully acknowledge and appreciate those who deal with ALS issues throughout the year and those who have made advocacy their life’s work, but a bigger effort — a movement — would help even more.

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An all-out war against ALS

How about a Marshall Plan to eliminate ALS? OK, that’s not realistic, I get it. But surely more could be done for a relatively small patient population if a movement of some kind were in place. We have seen this strategy successfully executed in the past.

I remember as a young boy, my biggest fear was getting polio and having to be placed in an iron lung with only my head out, so that I’d have to look at a mirror to converse with people. That disease was so terribly frightening to children.

As a matter of fact, the diagnosis letter from Lou Gehrig’s doctor at the Mayo Clinic said ALS was a “form of chronic poliomyelitis (infantile paralysis).” What had been mainly a childhood disease was being used to describe an adult affliction.

I recall both the polio vaccine and the polio sugar cube (a method of administering an oral, live-attenuated vaccine) developed by Jonas Salk and Albert Sabin, respectively. I had both.

The news of polio prevention was second to none at the time. Prior to that, there was only the iron lung and a famous victim, President Franklin Delano Roosevelt, who advocated for a polio rehab center in Warm Springs, Georgia.

There was an assault on polio, a movement that resulted in the near eradication of a dreadful and debilitating illness. The same thing happened with smallpox and other ailments.

Now, I’m not suggesting that the same actions can be taken to prevent ALS. I am saying how great it would be to establish a long-term movement against it. Our medical professionals today have access to far more information than what was available in the 1950s and ’60s.

A sustained and fully funded initiative, an all-out war against the common enemy of ALS — because it can strike anyone at any time — will give us victory. I sincerely believe that.

Here’s a thought: Let’s create a polio-type movement against ALS, and next May we can celebrate all of our accomplishments from the previous 11 months. Keep building on our progress, as Salk and Sabin did, and one day our children will no longer fear losing a parent to a bed and a breathing tube.

If we could stop fighting one another and start fighting against the things that threaten our collective well-being, we would have a far healthier, safer, and fairer society. June 1 is the starting point. Plan to enter the race — the ALS movement.

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.


Cynthua avatar


Lou Gherigs died 81 yrs. ago from ALS
still feels like nothing has been done. There is no cure,
There is nothing to prevent ALS.
I go to my ALS Clinic (which I am forever grateful for)
Although I ask my Neurologist why is my voice like this? There are tiny muscles around your lungs that are dying. I ask; what can we do about this? Everytime
I ask this question I get the same answer NOTHING.
I am so blessed to have found a Hyperbaric Oxygen Chamber in Scottsdale AZ. There are also other helpful modalities ; ex: Power Plate that Dave's our muscles from atrophy , red light bed, red light laser,
I could go on and on. I should not be here today. The Chamber brought my lung capacity from 50% to 80%!
FIFTY percent to EIGHTY percent,
Totally life saving for A LS Community to prevent
our Lung failure .
I mentioned this in our support group. I don't believe it was the right place .
I don't know what stage I am in, I know I will survive.
I want the same for all of you!
Lovingly, Sincerely, and Gratefully yours,
Cynthia Petitti

Steve Rudolph avatar

Steve Rudolph

It's about time we had a war on ALS!


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