Originally Posted by paula_w

IF we act up, it probably needs to be with other illnesses and conditions, who are going through the same thing anyway. pD does not have the numbers that the Aids movement had, or cancer or alzheimers. Many pwp don't know they have it, remain anonymous for many reasons, etc etc.....we are a relatively small population. Not enough to act up in numbers. But we could become very creative with You TUbe and a website. Peg, can you start designing political cartoons - they will be needed. Anyone else do cartoons? i envision blog, debate columns, guest columns, and video interviews.

Carey and i discussed doing an agitator /idealist column on a regular basis.

Let's kick up some dust....patient dust. The kind that gets in your eyes and burns......I'm not in the business of pushing clinical trials just for the sake of them. They need to show the benefit to all - that's a bill or a reg that is changing somewhere isn't it? i'll check tomorrow - visited with a brother that i hadn't seen in way too long today. As usual, we just picked up where we left off.

Reminiscing - I do a lot of that right now. It's rejuvenating to do it, put it away, and move forward.

i have made a resolution - no more guilt [unless i deserve it]. i'm finishing this battle as me, not as anyone who has to please someone else, because in being me, i will naturally help someone else. i know who i am ....and where i belong.

I am proposing funding be sought for visiting and filming research for online viewing of what all investigators in labs and trials are actually doing -a must before considering supporting a trial through recruiting. We could compose our own list of researchers in need of help and willing to collaborate. Then we can try to match them with potential partners. I see a new database being needed, or fields added to the pdpipeline database.

Uber patient may have to be approached, along with Kinetics Foundation. They still don't realize we deserve to be funded for innovation beyond speaking at conferences. We need to prove it to them. That means resources and unity.


paula