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, July 23, 2016

The Drips Don't Add Up

Yesterday we received a promotional infographic -- http://www.alsa.org/fight-als/edau/ibc-progress-infographic.html for "Every Drop Adds Up" (a registered trademark of the ALS Association).


One drip caught my eye --



Whoa. The CDC's ALS Registry had nothing to do with the ice bucket challenge.  It had been going on for years and is completely funded by taxpayers.  We advocates are sent by the ALS Association to Capitol Hill every May to request those increased and generous funds.  And in 2014 and 2015, the ALS Association itself actually got $659,451 from the CDC to promote the Registry per usaspending.gov.  That would have happened regardless of the ice.  And the total price tag on this "largest" project is well over $70,000,000 in taxpayer funds.

We got the first report on national ALS prevalence from this "largest" project in 2014, the year of the ice, and it identified just 12,187 people living with ALS in the entire country.  It asserted prevalence based on that number.  The ALS Association concurred with the report and its assumptions and has called the CDC's Registry a resounding success.  http://www.alsa.org/news/media/press-releases/atsdr-reports-first-data-set.html

Hold that thought.

Our information-seeking eyes moved to another drip --



The ALS Association (which serves only a subset of the total people with ALS in the United States) has personal contact with 15,000 people with ALS annually?

Whoops.  These drips certainly don't add up.

This makes the CDC's 12,187 publication look absurd.

This makes the CDC's well-paid contractor look ineffective at moving the 15,000 people it serves annually to self-enroll in the Registry.

This makes the ALS Association look complicit in promoting a project and its published data as successful and valid when it knows otherwise.

The parting drip --


It's past time to turn over some stones.



1 comment:

  1. I have been following this blog for a while now and i decided to share my story on how i survived and got a cure from ALS which would have maybe by now killed me. I was diagnosed with ALS in 2013 and it came with symptoms like overall weakness and i could not swallow and i ended up in a wheelchair though my doctor tried to put me on occupational therapy and physiotherapy but none seemed to give a relief as my condition grew worse in 6 months. I was lucky to have contacted Dr. Joseph and used his herbal medicine that treated me and gave me life, just 3 months of using the medicine which spans for 6 months positive improvements were visible, like my speech, all movements. A few years have gone by and i am still very much alive and healthy. Do not give up, you too can get a cure you can contact him directly on the contact below (josephalberteo @ gmail. com) for advise and effective solution. I pray you get cured soon.

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