Wow, so much said and so much to say! I am deeply moved by people's invovlement and passion. I really thank each of you for speaking.

Greg, didn't mean to minimize what's already been done about the Amgen publicity material. I know that a NY Times Ad would be unbelievably expensive, so I was being a little specious, but trying to think big because sometimes it's easier to raise $1million than $100,000. Or so they say. BUT getting it on the organization's websites would be incredible - and yes, I can well imagine that donor sensitivity is an issue. It's kind of the issue. But there may be more that can be done there, or at least force some conversations to be opened.

I'm not quite ready to throw bags of blood at anyone either, although I am ready to be confrontational. It's helpful to read about the inner goings on of trying to get patients to be included in the conferences...why am I surprised that certain illustrious neurologists with truly despicable ties to industry are machinators in the whole thing. But the interests of US patients as well as international people I think would be served by a strong patient presence of some kind at the Glasgow conference.

It's hard to act alone. That's why I think it's maybe time for a real patients consortium that isn't afraid of saying things that will bring discomfort. That way we could say to our doctors directly, "I'm part of this group of Extremely Concerned Patients, and we want to request your advice and participation on how we approach hospitals to educate the nursing staff about our needs. ASAP." And using the royal "we," and having something we could put in their hands at the same moment, might make that act possible for many of us.

Rick, you totally broke my heart with your written piece - it is so beautifully and horrifyingly written, and really totally nails it...and I think it would be a reallly strong act to start distributing something like that at events or support groups or whatever...The only thing is, I think it's important to also look to the positive side of things - that we as united patients could accomplish a lot, that there are things on the sidelines like GDNF which might be terrific if only we could exert enough pressure to get them developed and fast-tracked, and there are under-emphasized and under-developed aspects of treatment like movement therapies which are and can be enormously helpful - so to also emphasize some of the positive resources that the docs won't tell them about, at the same time as reinforcing the absolute necessity for pushing for change or these things won't add up to enough help.

One thing about the AIDS activists though that I've been realizing, is that they didn't wind up getting a cure. They got a way to stop dying and even have manageable lives. That's still better than what we have, but it also conveniently makes them a continual source of income, much better than if everyone kept dying young. So, I hate to say it, but the financial interests that exist were actually fed by their activism, rather than the other way around. And whose to say what would have happened if that was not the case?

Another issue is that while many of us have similar spirits, we might not all agree on the agenda items, so not sure how to deal with that. Maybe agree on a few, and try and get those done. For instance, Paula, much as I support you personally and hence the way you see the best work being done, for my own personal reasons I am not a big champion of genetic analysis, and have no interest in it for myself. That would make creating a strong video of advocacy for that particular issue difficult for me - plus while it's totally ok with me if you use the dance footage, it's not entirely correct to say that it is in my past at this point...I'm still doing it!

There were many points in what many people said that I think are very worth discussion and addressing. I have to stop for now but will continue later.