It is wonderful that the ALS foundation has seen a huge financial windfall from its creative ice bucket challenge fundraising stunt. All terminal disease is terrible but ALS is a truly horrible disease. And there is, at the moment, little hope for effective therapies. But the ice bucket challenge has, for the moment, changed the focus of the questioning from – how to raise more funds? to what to do with the funds? And as difficult as fundraising is – using privately raised funds to spur new research for terrible diseases is, in my view, one of the most difficult challenges one can imagine. There will be no shortage of experts ready and willing to tell the charities where to put their funds.
Much of it will boil down to funding more of what is already being done.
ALS has always struck me as one of those diseases where we might have got ourselves into a local minima with respect to ideas. it seems like we are missing something – that to step back and really look with fresh ideas at the human disease, unbound from all our preconceived notions and scientific biases is needed. I know this seems wasteful to many in the scientific community who feel that we’ve got the right nail – what is needed is a bigger hammer.
Maybe. But I think this is where the private dollars could really make a difference. But it has to be an authentic conversation. And some of the voices really have to be new. And there has to be nothing too sacred to at least be considered for throwing under the bus. The ALS folks have shown they are willing to be really gutsy when it comes to raising funds. Now let us hope they will be equally gutsy when it comes time to spend.
No agendas, only honest talk at the intersection of science and society.