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.

Wednesday, August 20, 2014

We Have Rare Publicity for a Not-So-Rare Disease Experience

This morning I unwrapped the morning paper.  On the front page was a huge picture of the head of the IU Health ALS Clinic as the ice water hit.  That was the second time in two weeks that a nice picture mentioning ALS has been on the front page of the Indianapolis Star.  That was the second time in two decades, for that matter.  It as been an amazing few weeks for ALS awareness.

I will admit a bit of envy that I couldn't be there to help dump the ice.  My 18-year-old memories of the neurologist are complicated.  We had the confidence that we were getting the best care possible for Mom.  At the same time, I would have given anything to be able to dump ice water on a healthcare delivery system that was inefficient and slow and that lost the beloved patient.  This morning I wondered if the doctor would remember Mom.  She was special.  There can't have been that many ALS patients in Indiana, right?  Wrong.  Since he saw Mom, he has probably lost well over 2,000 ALS clinic patients.  He never has all that many alive and in his care at any moment, but the turnover is brutal.  Most are in his care for a very short time. Would he even remember Mom amidst the 2,000 others?  The numbers lost to ALS defy the concept of the word "rare."

The television is on in the family room right now.  They just told of a big #ALSicebucketchallenge that will be on the noon news today.  Every day this week the local stations have mentioned ALS.  

And yesterday one of our local radio sportscasters did one of the best  #ALSicebucketchallenge videos ever.  I share that with you here and ask that you might pass this along to people who don't know much about ALS.

It has been some rare publicity for a disease that people need to understand.  It's about time.  

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