Project ALS is at the forefront of much research in understanding the basic science of the disease (or perhaps diseases) ALS.
When the right wing religious nut-jobs in the USA denied funding from federal dollars to research projects that used fetal stem cells (at the time the best research vector), Project ALS set about to provide enough money that federal dollars would not be needed and research based on fetal stem cells could continue. This was a ballsy thing to do, since so much scientific research in the USA is ultimately funded by the Federal Government. Project ALS derives a significant part of its income and support from people in the entertainment industry. Famous actors and directors and other people associated with Hollywood and the NYC TV scene are prominent supporters of Project ALS. There are two reasons for this of which I am aware: 1) The organization was founded by two sisters in the Estess family after their (third) sister Jenifer developed ALS. Jennifer was an agent in Hollywood and knew many actors, etc, and was evidently liked or loved by them; 2) On of the key organizers in Project ALS is Rob Burnett, who is (or was) producer of David Letterman's Late Show and several other very successful TV shows. Rob is in fact David Letterman's business partner, co-owner of Letterman's corporate jet, etc. He is very wealthy. About ten years ago Burnett was the executive producer of the Academy Awards TV show. As such, Burnett is very connected with hundreds or even thousands of people in the entertainment business. He knows these people well and he importunes all of them to support Project ALS. Many of them do, including Ben Stiller, Jon Stewart, Chris Rock, Sarah Silverman, Tom Hanks and others. Rob Burnett has basically made eliminating ALS one of the key goals of his existence. Why ALS? Well, the man who was Rob's best friend from age 10 to age 45 died of ALS in 2008. His name was Paul. Rob & Paul were extraordinarily close friends, even though they took very different career paths. Rob produced the Late Show; Paul worked for his father-in-law managing apartment complexes in Colorado Springs after his mountain-bike & snowboard business failed. Rob & Paul were "best men" at each others' weddings; their families vacationed together. Paul was my brother, ten years younger than me. Regards, jrs On Aug 22, 2014, at 10:34 PM, SS wrote: > As it turned out the poor guy who conjured up the ice bucket challenge > started it because he had a close friend who was diagnosed with ALS and > was distressed to see that friend fade away.
