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.

Sunday, November 7, 2010

What If They Held A Census And Nobody Came?


Statisticians can do amazing things. We saw that last week when elections were called fairly accurately within minutes of polls closing. For some things though, no amount of statistical magic can substitute for an old-fashioned count of noses. This is the case with ALS.

ALS advocates finally obtained the permission of the United States along with the funding to make such a census happen. This census has been named the U.S. ALS National Registry. It started counting noses a few weeks ago.

If you have ALS, please go to the CDC (an agency of the United States Government) website and have your nose counted by "joining the ALS registry." https://wwwn.cdc.gov/als/Default.aspx

Until all people with ALS join the registry, you will be cursed with both low estimates of how many people have ALS and a lack of data to prove what environmental factors might play a part in ALS.

If you have ALS, please enroll. If you know anyone with ALS, please urge him or her to enroll.

I buried a loved one to ALS and the clues that her medical and life history contained were buried with her. That need not happen ever again.


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