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.

Thursday, April 3, 2014

And In The "You Can't Make This Stuff Up" Department

Picture this.
  • One arm of our government has built a national ALS Registry featuring online information, data entry, and risk factor surveys for people with ALS.  They have spent almost $40 million taxpayer dollars and are asking for more.
  • Another arm of our government has just implemented rules for people with ALS who need Speech Generating Devices.  They will not be able to access the internet during a 13-month rental period.  
Duh.  Do these people ever talk to each other

We have just built a very expensive highway and have blocked access to the people who need it most. And those signs that were put up April 1 are going to be dreadfully expensive to take down.

This is just outrageously stupid.

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