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.

Friday, February 4, 2011

And So We Wait Some More

There was obviously an ALS Surveillance Meeting on November 3 (see the pics).

So I asked about the proceedings --
Are any proceedings from the November 3, 2010 ATSDR ALS Surveillance Meeting available to the public? Thank you for any information.

And I got this reply --
Thank you for your interest and support of the National ALS Registry. The 2010 ALS Annual Meeting Summary Report is not available to the public at this time. Once the report has been finalized and approved it will be posted on the ALS Registry website. We anticipate it being completed by late spring or early fall.

If you find that you need further assistance, please feel free to contact the National ALS Registry System Administrator toll-free number at 1-877-442-9719 or email the National Registry System Administrator at
ALSSystemAdmin@cdc.gov (9am-6pm ET).

3 comments:

  1. If Sarah Palin can reference the letters WTF, I concur.

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  2. And we are being asked to advocate for another $10 million for the CDC. Maybe they need the funds to produce the minutes.

    Maybe they deserve what they are producing?

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  3. It makes you wonder what went on at that meeting that is so hard to explain, doesn't it?

    This does not do much to add confidence to a project that many of us have supported yet seems to be shrouded in an unusual secrecy that gives the CDC a pass on accountability to those who worked hard to enable them with legislation and more than ample resource$.

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