Slacktivism is a horrible disease - why the Ice Bucket Challenge is wrong

Does this ever make me mad. ALS Canada has taken down its information site to provide quick links to the Ice Bucket Challenge. I have a client with ALS, whose symptoms are worsening. I want to learn more about this disease to prove better respite care. What are they thinking? This hijacking is awful. It's slacktivism at its worst.

I have no money left to donate. I donate to several causes. I donate my time most of all.
Good causes need sustainability. They need to provide support to families, much more than just doing research.