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, April 5, 2014

Picture This

In the past week we've learned bits and pieces about various not-for-profits' positions on a number of issues that are important to those with ALS.  There does not seem to be a place where we can read the letters and statements that they have made to government agencies and other not-for-profits about various policies and legislation.

We pretty much have our friend google guiding our way as we stumble along trying to find out about governmental agendas and policy statements that have happened in the past.

Picture how helpful it would be if organizations that take positions or make statements or send letters would simply post them for us to see them as they are made.

It would add perspective and information that would make advocacy efforts much more powerful and cohesive.  Please post those documents in a visible place so we can read them and learn and understand.

It's simple.  Transparency is good.  Timely transparency is best.  Everybody wins.

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