CHARLOTTE, NC: Ever since the “Ice Bucket Challenge” went viral in 2014, it seems that awareness of ALS has grown dramatically. It was in 1956 that comedian Jerry Lewis started a Labor Day Telethon that was an annual televised fundraising event to support the Muscular Dystrophy Association (MDA). Over the years, Lewis raised millions of dollars for research to battle neuromuscular disease. ALS falls beneath the MDA umbrella.
Though ALS is a sister ailment, the focus of the Lewis campaign was primarily upon children. Indeed, a noteworthy cause, however, ALS – Amyotrophic lateral sclerosis was rarely mentioned.
The Ice Bucket Challenge
Lewis died in August of 2017, but the telethon, without his dynamic support and enthusiasm ceased to exist in 2014. That is the same year the “Ice Bucket Challenge” grabbed the collective attention of the country.
No one quite knows where the Bucket Challenge started. Origins of the idea of pouring cold water on someone raise money for charity are muddy at best. The most popular version goes to Peter Frates, an alumnus of Boston College. He received his diagnosis with the disease in 2012.
Also credited with the idea is a close friend of Frates’, Pat Quinn, another 2013 ALS victim. However, another “co-founder” of the challenge is Corey Griffin, yet another Frates buddy.
Later, “The Wall Street Journal” claimed the genesis of the idea came from professional golfers as a way to lend aid to their favorite charities.
Whichever is true is of little consequence. The primary result has been greater awareness of the disease that took the life of New York Yankees Hall of Famer, Lou Gehrig; an affliction of the nervous system that bears his name.
The Ice Bucket Challenge still not melting
The “Ice Bucket Challenge” efforts to “rally round the flag” to battle the cruelties of the disabling, and ultimately terminal, condition have increased incredibly since 2014.
Certainly, the effects of well-known people like physicist Stephen Hawking, actor David Niven and athletes such as “Catfish” Hunter, Dwight Clark and Steve Gleason have helped establish greater awareness of the disease.
Gleason, most remembered for his blocked punt the night the New Orleans Superdome reopened following Hurricane Katrina. Now 41, the former Saints safety is confined to a motorized wheelchair. He relies on a ventilator for breathing, a feeding tube for eating and a special computer in order to speak.
“Team Gleason” is the name of his foundation. It challenges others to seek and identify the most promising developments for the treatment of ALS and a cure.
Is there a cure for ALS?
It is difficult to determine whether awareness of a particular situation is actually growing or merely a matter of perspective. For example, when a man begins to lose his hair he immediately notices more people around him with similar conditions. The same is true of beards and tattoos etc.
But is that truly increased awareness or a figment of the victim’s imagination?
Or is there a greater awareness of a frightening disease when diagnosed with one? Or is your awareness increased because you are personally affected?
As spring morphs into summer, people venture from their homes to enjoy the sunshine with all manner of activities. The ingenuity of the American spirit thrives through our options for fun and challenging events that battle debilitating diseases.
The ALS Association has a varied list of unique events each year including marathons, swimming, walking and competitions designed to raise money and awareness of the disease.
Among the more interesting ideas is “Ales for ALS.” It’s a program where participating breweries receive a special blend of hops for free. It creates a delicious brew with a dollar of each beer sold going to ALS research. Yeah, beer!
Believe it or not, last year, over 140 participating breweries raised more than $1,750,000. Who says ALS can’t be fun?
Amazon also has a program, called the “AmazonSmile Foundation.” It’s an easy way to support specific ALS charities through more than 125 affiliated charitable organizations.
There are also skydiving events and fire walks and, for the less adventurous, I have my own Softball Challenge on Saturday, May 19 pitting my Red Sox all-star team against Lou’s Yanks. This will be the second year of the event complete with hot dogs, drinks, live music, a raffle for a new Cleary bicycle and Carolina Panthers tickets.
All in all, ALS is on the losing end of this battle. It’s just a matter of time, and it is certainly a disease all of us can live without.
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)
Editors Note: Support Bob’s GoFundMe to give him a hand up