And so the backlash begins. Unbelievable. ALS is an orphan disease. That means it is considered a rare disease that has not been adopted by the pharmaceutical industry because there is little financial incentive to do so. So to all of you complaining about the #IceBucketChallenge, hear this: This amazing effort has raised awareness like never before for a disease that a great majority of the population has never heard of - and if they had, they had no clue about how devastating it is. Seventy-five years after Lou Gehrig, there is not only no cure, there is NO TREATMENT. Heres what a patient is told when he or she is diagnosed: Get your affairs in order; youve got two to five years left. (My Dad got 22 months. The final four were in a hospital bed.) The Ice Bucket Challenge was started by two young men with ALS - once college athletes who are now facing certain death and they are not yet 30 - who wanted to raise awareness and challenge people to donate. And people have - donations to support people with ALS and research have topped $5 million. Last year total, ALS donations were maybe a few hundred thousand. And if youre concerned about the few gallons of water the Breiers used, we did the challenge on our parched lawn.
Posted on: Sun, 17 Aug 2014 20:42:46 +0000
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