ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Saturday, August 16, 2014

We Now Have Our Celebrity Spokespeople, Thank You!

ALS has been a forgotten disease for decades.  There has been an abysmal lack of awareness and understanding.

So many diseases have had charismatic A-list celebrities raising visibility.  Our cause had lesser celebrities who read scripts and had no inner fire, and they came and went.  And when they went, they really went.

Three weeks ago when I first read of the ice-bucket dumping, I rolled my eyes.  Fine fun, but we have serious work to do.  I've grown weary of trying to deal with the serious problem of ALS with bake sales and cute fundraisers in a world that can't even remember the name of the disease.

Then in a few hours you could see the #ALSicebucketchallenge traction start.  It was people connected to Pete Frates.  I thanked God that people who played ball or went to school with Pete Frates obviously loved him.  They would walk through walls or dump ice water on their heads for him.  If you've ever met Pete, you would understand why.  And there were more connections to Pete and the love for him spread with a special energy.  And the city of Boston and the state of Massachusetts showed us a special kind of loyalty to a local hero.

And then even more connections started via another young man with ALS, Steve Gleason.  He, too, is beloved and has a special kind of charisma that you see in a smile that ALS hasn't stolen.  And the #ALSicebucketchallenge kept growing.  And the city of New Orleans and the Pacific Northwest showed us special loyalty to their hero.

In the past three weeks, we have seen the best celebrity spokespeople ever in the fight against ALS.  And they brought along their friends Ethel and Satya and Martha and Bill and Oprah and so many others. 

The irony of this is that Pete and Steve can't "speak" the same way you and I do.  It's not so easy for them, but thanks to technology, they are shining stars who can lead the discussion about ALS and show the world how important it is that we all pitch in and fix the problem.  

Thanks to today's technology and social media, we have the best celebrity spokespeople ever, and they have delivered a lot of friends to the fight, and we thank them.  



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