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.

Thursday, June 10, 2010

We Need More Diane Rehms

On Monday, the Diane Rehm Show on NPR featured a panel discussing the BP oil disaster in the Gulf on Mexico. The discussion hit many aspects of the situation -- liability, environmental impact, stopping the gusher, cleanup, coordination, etc.

A caller initiated a question about the health implications, and she focused directly on ALS. She recalled having seen many people from Saudi Arabia seeking ALS treatment at the Cleveland Clinic. She also recalled the work done in Kentucky that shone light on the vastly increased incidence of ALS among Gulf War veterans. Her question -- was anybody looking that the possible connection of oil exposures to ALS?

The panel didn't know, but we found out today that once a good question is asked, Diane Rehm doesn't go quietly without some answers.

Today she conducted a very informative interview with Coast Guard Admiral Thad Allen, the head of our government's response to the oil disaster. http://thedianerehmshow.org/shows/2010-06-10/coast-guard-admiral-thad-allen The topics of her questions ran the gamut, and finally the topic of health came up again. She honed right in on the ALS question that her caller had asked on Monday. She had not forgotten. She obviously realizes the high stakes of a possible ALS trigger. She pressed for an answer. Admiral Allen did not have an answer, nor was he aware of that question having been asked previously, but he promised to pursue it. As a member of the U.S. military, he has a personal vested interest in learning more about ALS... http://www.alsa.org/files/pdf/ALS_Military_Paper.pdf

As our country deals with the oil catastrophe, perhaps it will add a little fuel to the fire to have the CDC deliver a working ALS Registry sooner than their original timetable (which has been excruciatingly slow) http://wwwn.cdc.gov/ALS/ALSTimelines.aspx We have a very good and immediate reason to start collecting data on ALS cases right now. The fact that the branch of the CDC that is working on the registry is the Agency for Toxic Substances and Disease Registry would make you think that the increased oil exposure that so many Americans are currently receiving would be of potential concern.

Thank you, Diane Rehm, for pressing for answers. Since nobody has been collecting comprehensive data on ALS, we need to pay attention to questions and press for answers. The stakes with this disease are a matter of life and death... and a difficult death, at that.

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