It may be significant that Lou Gehrig’s Disease is now known by its real name.
In the coldest way possible, Amyotrophic Lateral Sclerosis (ALS) has grown into one of the hottest things in marketing. Sufferers of one of the most hopeless of diseases now have hope.
Gehrig, the Hall of Fame baseball player known as the Ironman because of his consecutive games played, died of ALS, which attacks the nervous system and spinal choard and leads to total paralysis, shutting down the body.
It’s long been considered an incurable disease with life exoectancy of two to five years after diagnosis.
There is no effective treatment, only one FDA-approved drug that only extends survival a few months. It has not been treated effectively because it has been underfunded because it is not as well known and widespread as other deadly diseases. Basically, the prognosis has not changed since Gehrig made his famous “luckiest man alive” farewell speech to baseball in 1939, then died at age 37.
Research has been limited because of a lack of funds it’s not as common as heart disease, cancer, AIDS, diabetes and other diseases that affect more of the population. ALS awareness got a brief spike through Mitch Albom’s bestseller “Tuesday’s With Morrie.”
Now, through almost something that was done as a whim and through the power and linkage of modern technology, ALS has emerged from the shadows to one of the most remarkable connectiodns from celebrities to youth I have ever witnessed.
The Ice Bucket Challenge has ironically has intensified the heat of research long overdue.
You’re seeing the drill over and over. Folks allow an bucket of ice water be poured over their heads (like the winning coach in a big football game), then challenge three other people to go through the same experience. Thereotically, a person who passes up the challenge is supposed to donate $100 to ALS research. Take the chill, and the donation is $10 — but most donate more.
The ice bucket thing for ALS is not entirely original. It began with individuals posting videos on YouTube encouraging folks to donate to their favorite charity. You may have seen women’s basketball coaches and teams having buckets of ice poured on them for the Kay Yow cancer fund.
Patdrick Quinn, stricken with ALS, saw the concept and linked online with Peter Frates, a former Boston College baseball captain who also has ALS. Frates took the concept to a new viral level. Unable at the time to be doused with ice and unable to speak, Frates began the video craze by simply bobbing his head to the 1989 hit “Ice, Ice Baby” by Vanilla Ice.
That has led to a groundswell unprecedented in charity work.
In 1993, researchers discovered a gene mutation that may have been at the root of the cause. Thirty-five other mutations were discovered. Researchers were excited and convinced they were seeing the first steps to a cure. Scientists began lining up for major research But they haven’t been able to pursue it because of lack of funding and awareness,
Now, they have both.
The comical icy challenges have led to ALS and ice buckets becoming household terms.
And they are generating cold cash.
And more than $22 million has been raised for ALS research in two weeks with 260,000 new donors. At this time last year, donations were $1.7 million. More than two million videos have been shared on social media and that total is growing by the day.
What started as a trickle has produced a tidal wave of hope.
It may be a game-changer on how money is raised for charity.
It’s a nugget of good news in what seems to be a world of bad news right now.
(Sports columnist David McCollum can be reached at 5010-505-1235 or firstname.lastname@example.org. Follow him on Twitter @dmaclcd)