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.

Tuesday, June 23, 2009

Sometimes We Make ALS Advocacy A Lot Harder Than It Needs To Be

This is the last week of the national CVS campaign to raise funds for ALS research.

On Sunday I ran into a CVS and asked the young cashier if they were still collecting funds for Lou Gehrig's Disease at that store. She gave me a funny look and told me that they were for ALS.

Ding, ding, ding. Advocacy opportunity. We had a cashier who has been offering people a donation "upsell" at the end of every transaction who did not appear to know what ALS is. I asked her if she knew what ALS is. No. She said she didn't have a clue. There was now a line accumulating behind me. It was time to speak loud enough for the gathering crowd to hear. I told her it was Lou Gehrig's Disease, a terrible disease that kills people. I thanked CVS for taking those donations since the disease is a mystery. I put a few dollars down on the counter and the cashier gave me a receipt and a bunch of paper ornaments to put my name on to be displayed in the store. I told her that my name wasn't important (much to the relief of the people in line) but to please put those up and keep people donating.

Every time I go to an ALS activity in a hotel, I always ask the desk clerks or the service staff in the dining room if they know what ALS is. It's amazing how few do, yet often they've been working with an organization and a crowd at a big ALS conference. We miss far too many opportunities to educate the public about ALS. It's simple to explain to people at a hotel desk or the folks serving breakfast what ALS is... and what it does... and why it's a problem.

Sometimes we trip over the easy opportunities as we pursue the difficult ones.

We should never just say, "ALS," in a conversation. It should always be, "ALS - Do you know what that is?"

p.s. Please stop in a CVS this week and donate a few bucks and make sure that the cashier knows what ALS is and that we're grateful for CVS stepping up in a public fight against ALS.

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