Living with ALS : Continuing awareness of amyotrophic lateral sclerosis
CHARLOTTE, NC: There are so many good and legitimate causes in the world today, it almost seems selfish to endorse one over another. To ask for a little help with fundraising. The tendency, of course, is for those who suffer from a particular affliction, or others who have been affected by it, to have a more personal reason to advocate for research. To increase awareness of the disease and the people behind it.
May has come and gone, and with it, the conclusion of another awareness month for ALS.
But should May be the only month of the year when people pay attention? And, as with other diseases, should they be forgotten and put on the back burner for 11 more months?
The conundrum is whether, during those days of May, ALS is suddenly more important than other conditions with similar needs for awareness, funding and/or regulations?
As Rick Jobus, a fellow ALS patient, observes
“ALS is an indiscriminate, relentless, amoral, sadistic, Machiavellian monster.”
“Pity is superfluous and attention-fleeting; empathy is impossible. I believe that the true measure of an awareness campaign’s success is how well people are poised for future action. Will they contribute to fundraising campaigns? Will they advocate on our behalf when regulatory decisions are being rendered? Only time and the residual memory of May’s message will tell unless the potency of our annual awareness initiative is periodically refreshed.”
To wit, I have no ability to relate to the concerns of cancer patients at any level. Nor can I comprehend the difficulties faced by those facing any number of other debilitating torments.
So why should I attempt to make my particular ailment appear to be more tortuous than another?
The Math of ALS – How many years?
While Jobus’ thoughts ring true, it is always best for those closest to any particular affliction to dedicate their efforts to that which they are most familiar. To work toward a goal of awareness of the disease. While not leaving the impression that their specific condition carries more weight than another.
As we continue to battle onward we should be reaching out to those within our own circles of friends, neighbors, and relatives to extend ALS awareness into a year-round program, far beyond May’s 31 days. Rick Jobus is correct in his suggestion to “point out the impossible ALS math of the average survival time from diagnosis being three years, while the typical time-span for Phase 3 clinical trial and treatment approval is five years.”
It’s a legitimate aspect of ALS awareness to understand the “math” of the disorder and what the general limitations are for sufferers.
On the other hand, a person diagnosed with terminal cancer who is given 6 months to live clearly has more immediate concerns than someone with ALS who may have five or more years of quality life ahead of them.
My family and friends gather for ALS Awareness the third time
For my part, thanks to the dedication of my son and the loving involvement of my family and friends, we began a fund-raising softball game three years ago in an effort to raise greater awareness for ALS.
The first game raised $15,000 and the next year added $25,000 more. As the third annual confrontation approaches, the game will take place in October to take advantage of cooler weather.
Another game has been added to include two National League teams, one of which will honor Joe Martin, the founder of the local ALS Foundation which bears his name. Martin himself died of ALS but his efforts on behalf of the affliction continue to reach out to those who require comfort, support and care as the condition slowly deteriorates its victim’s abilities to function normally.
The goal to raise $45,000 this year is a lofty one, but growth is the name of the game, and with it comes increased awareness and research to fight ALS.
As usual there will be live music, hot dogs, bratwursts and soft drinks, a live auction and plenty of things to do other than softball. It seems to me to be a better alternative than merely seeking advocacy from those who have other equally legitimate causes to challenge them.
Ultimately, our goal is to capture the imaginations of some well-known personalities and/or prominent athletes. Guys and gals who can lend their notoriety to the cause that will attract even greater support.
Lou Gehrig established ALS awareness in the late 1930s.
Catfish Hunter and Dwight Clark also died of ALS as did actor David Niven. Hopefully somewhere, somehow other celebrities will one day take notice and then the true battle against this obnoxious condition will be enjoined.
In that sense, I agree with the efforts of Rick Jobus, and others like him, to join in perpetuating ALS awareness in the manner you choose and to the extent that you can.
Let’s not pigeonhole awareness of any disease to a single month. Rather let’s choose our individual battles according to personal awareness. And in the process educate others to perpetuate those causes until they can be either eradicated or, at the very least, minimized.
About the Author:
Bob Taylor is a veteran writer who has traveled throughout the world. Taylor was an award-winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.
Taylor is founder of The Magellan Travel Club (www.MagellanTravelClub.com)
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Lead Image: Photo by Steshka Willems from Pexels – https://www.pexels.com/photo/white-baseball-ball-on-brown-leather-baseball-mitt-1661950/