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.

Friday, January 23, 2015

Will The ALS Ice Bucket Challenge Have A Surprising Legacy?

Perhaps the real legacy of the ALS Ice Bucket Challenge won't be the buckets of money.  Perhaps it will be that individuals found voice in the fight against ALS.

This week there have been incredible examples, all with roots in individuals who spoke and acted --

The meeting of Steve Gleason directly with HHS Secretary Burwell and key Senators and government officials. 
An online petition of the FDA that now has 85,000 signatures. 
And this eloquent piece from a man with ALS.

We are our stories and so much more.  There are thoughtful individual voices in the fight against ALS.  Yes, sometimes one voice is all it takes.

Thanks to all.

1 comment:

  1. When you realize, and see firsthand the toll ALS takes on family, and friends, being straight forward, angry, and bold with social media is the very least we can do. If only we could convince ALS organizations to follow. Lives depend on it.