Let’s step up our advocacy efforts for ALS research

As I consider the progress we’ve made on ALS, I can’t help wondering if our overall awareness will continue to grow and lead us to even more sensitivity and advocacy. What real action will take place? Will initiatives be developed and sustained? Will we patients be closer to relief next year than we are today?

The ALS Association answered my inquiry regarding its plans by informing me of current and future activities, which are comprehensive and wide-ranging. I trust its efforts will be successful and generate much-needed funds. I also hope we’ll continue our collective efforts all year long.

One great event took place in my hometown of Cincinnati, when the Reds baseball team and the Zac Brown Band raised $200,000 for ALS research. One of the band’s members, John Driskell Hopkins, has ALS and has become an advocate in the fight against the disease.

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Toward lessening suffering

We need one another, across all of the superficial boundaries that divide us, because anyone can get ALS or any of many lesser known but similar diseases that have no cure. One of those diseases that I’ve learned more about is spinocerebellar ataxia, mainly because I have a friend whose husband and daughter now have it.

Considering how badly patients suffer from these rare ailments, our society should do all we can to lessen that suffering — not just during a designated period of time, but continually.

How can we accomplish that? Well, I think the Zac Brown Band and the Cincinnati Reds put forth an excellent duplicative model. Imagine how much money could be raised if at 162 baseball games (the 2023 total for Major League Baseball) and 272 football games (the 2023 total for the National Football League), each patron would donate $5.

I may be dreaming, but it’s a great dream. I’m grateful for all the events and other efforts thus far in support of ALS research and patients. I believe that whatever we set as our collective goal, we will accomplish.

Finally, there is an effort by the ALS Association to get more and faster approval for external ventilators. They’re so vital to a patient’s quality of life, and in my case, the quantity of life. No one who needs breathing equipment should have to do without it or wait an inordinate amount of time and jump through insurance hoops to obtain it.

Here’s to everyone who helped us last month and to those who’ll help us in the future. Stay strong and engaged in your commitment to advocacy.

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.