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, May 31, 2014

"ALS Awareness Month" in the US Is Officially Declared A Failure

We now have the most objectionable fundraising premium in the history of fundraising.

We understand that the people who run a factory in China that makes little dolls whose heads wobble when you tweak them have probably never seen the neck weakness associated with ALS.

We realize that baseball team gift shop managers who like to sell souvenirs have never had to shop for a neck brace that a person with ALS needs to prevent a heavy head from flopping painfully.

And we know that collectors on eBay have no idea of practical difficulties (from breathing to vision) of neck muscles that simply can't support a head.

These people don't know what happens to people like Lou Gehrig after they say their farewells and slip privately into a difficult journey with ALS.

But people who accept paychecks from an organization whose mission begins with "Leading..." and contains the word "compassionate" should be able to grasp that a little statue of a man with ALS whose head wobbles uncontrollably is simply offensive and disrespectful.

And they should educate.

We need an advocacy organization that stands up for the respect and civil rights of people with ALS.

It's not that hard.  You don't mess with PALS or disrespect them.  Period.

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