Well, Bill, I have to say that personally speaking, I think you are exactly right! And I'm not giving up. (I personally operate in a behind the scenes manner.)
My thought (first) is to try to apply influence or even exert pressure on the current organizations that exist for and on behalf of MSers to represent us or help us in the manner in which we prefer
. This approach may appear to be taking baby steps, but at least they are steps, right? And this strategy usually takes a little time, and our credibility needs to be proven a bit, of course (which we definitely are doing - especially recently), but I've seen it work time and again. What I call "grass roots mobilizing" is not easy, but I believe it is happening. (And I am personally not only just talking about it, I have been actively pursuing it.)
And you're right. Additional ideas, etc. as you suggest should be presented and more importantly ACTED upon. It doesn't take a grandiose idea or action to gradually affect change. Even what appears to be the smallest of things, when combined with others' efforts, can result in pretty good momentum.