To the editor: Michael Hiltzik concedes that the degenerative condition ALS is a terrible disease with a fatal outcome. But, he says, it is a rare disease; he wonders if it is worth all this attention compared with other problems. ("A few (impolite) questions about the ice bucket challenge," Aug. 18)
ALS may be rare, but if it affects your family, then it isn't. My family watched my beautiful daughter in law, age 49, go through the stages of ALS to her ultimate death.
It is a horrific experience, particularly when you consider that the victim is locked in his or her body and at the end cannot even speak and is totally paralyzed. Most sufferers die from pneumonia or respiratory failure.
The rarity of a disease should not preclude more people donating money for research. As of today, there is no cure for ALS. If the Ice Bucket Challenge can make a difference, then those moved to donate should not be told to "give a bit more thought to where you donate your money."
Penny Neugroschl, Simi Valley
To the editor: Hats off to Hiltzik for having the courage to express his true feelings about the current fad to raise money for ALS research. He understands the horrors of ALS and that the money for research is most welcome.
But Hiltzik has very real problems with the here today, gone tomorrow ice-water craze, which should promote much serious discussion.
Hiltzik points out with great clarity that although ALS is a terrible killer, the incidence in the U.S. is very, very low, and there are myriad other charities out there that are, frankly, more important toward creating a better world.
Thus, posits Hitzik, not discounting the worthiness of ALS research, if all the money you will donate to charity this year goes to ALS, you should think a bit more about the destination of your donation. I agree wholeheartedly.