I hear ya, Jeff. I'm so tired of all the celebrity "news," and I keep hoping that it will fade away.
There are so many diseases that need attention, and motor neuron disease is at the top of my list. One problem is that the survival rate is so short for most people that there is a high "turnover" in the ALS population. So it seems to me that the strategy for ALS publicity should take this into account. I would love to see a high-profile documentary that focuses on the progression of the disease and really shows people what happens. My mom would never agree to something like that, so I can't offer to do it, though.
This is a good place to develop some ideas, and I hope others will come up with some suggestions. I'd be glad to help out.