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.

Saturday, October 6, 2012

Call to Action - WOOO - We're On Our Own!

The story of the FDA's list of 20 disease areas for patient-focused drug development continues. The plot thickens.

The fact that ALS was missing from the preliminary 39 candidates was found by an individual with ALS.  The comments being submitted to the FDA so far have been generated by grass-roots individuals interested in ALS.  We're on our own on this one, and we need to get ALS on the list as one of the 20 diseases areas for the FDA's patient-focused drug development initiative.  No big ALS advocacy organizations have picked up the ball on this one.

Other disease advocacy organizations for diseases that were already among the 39 candidates are on their cases, though.  Take a look at an example from the American Lung Association -- https://secure3.convio.net/ala/site/Advocacy?cmd=display&page=UserAction&id=5939 
They obviously think that it's important to be on that final list of 20.

We're on our own, and we need to rally everyone interested in ALS to make a comment to the FDA so that people with ALS will be a formal part of the patient-focused drug development process!

Since we're not on the preliminary list, we need to submit thoughtful, cogent cases for ALS.  We need to stand out amid a flood of emails and comments as a compelling disease whose patients' perspectives count.

Here's your link to make a comment to the FDA --
http://www.regulations.gov/#!documentDetail;D=FDA-2012-N-0967-0001


We're on our own on this one, and we must get ALS on this list!  It is important.






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