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.

Sunday, January 25, 2009

Where is our WherewithALS???

The ALS Registry Act was passed on September 23, 2008.

The 2009 ALS Advocacy Day on Capitol Hill is scheduled for May 12, 2009, 232 days after the passage of the ALS Registry Act.

Based on the conservative estimates of 15 American ALS deaths per day, almost 3500 people with ALS will have died between passage of the Act and the anticipated blitz on legislators. Their clues are lost since the ALS Registry has not been funded yet. Unfortunately there will be at least 3500 new families had no clue about ALS on that day in Septmber and are now living the nightmare.

Fortunately with today's technology, we can get our message out to our legislators without waiting for May.

There are 108 days from today until Advocacy Day in May. That's over 1600 funerals and 1600 new recruits. The relentless clock continues to click. We have a fresh administration and a fresh 111th Congress. Don't hesitate to be heard now.

Our government has authorization to collect the dots with that Act that was passed in September. Now we need the wherewithal to just do it... or maybe we should call it the wherewithALS.

1 comment:

  1. I think your article pushes also hard to the lack of communications available to the ALS public. To stay current with ALS, feeds can be used to monitor activity from any group and truthfully the silence worries us.