Brainstorm for GrassRoot Activism....

[xiblanque]

I agree with this quote from Sadsack...."Most new diseases get the attention they require as a result of grass-roots activism."
I am new here but have wondered how AIDS, Fibromyalgia and Chronic Fatigue etc... first got the media attention, funding and legitimaticy/validation as REAL diseases... does anyone know??? the first AIDS walk... the first charitiable campaign...etc. These past events may serve as some kinda template for all of US. We don't need to re-invent the wheel..... others have been down other horrid paths like the one we are on and we could perhaps "Stand on the Shoulders of Giants". I know some of us have media connections.... others have perhaps celebrity connects... still others have connections in the various fields of science.... We could start a thread for BRAINSTORMING these various ideas and try to organize in a cohesive manner to bring the much needed attention and funding..... I don't know... but I've never been exposed to such valiant, passionate and intelligent people before... maybe i'll start a post called Brainstorming on Grassroot Activism....
get it together people....
Xiblanque

[xiblanque]

really...anything?
x

[Sadsack]

Originally Posted by xiblanque

I agree with this quote from Sadsack...."Most new diseases get the attention they require as a result of grass-roots activism."
I am new here but have wondered how AIDS, Fibromyalgia and Chronic Fatigue etc... first got the media attention, funding and legitimaticy/validation as REAL diseases... does anyone know??? the first AIDS walk... the first charitiable campaign...etc. These past events may serve as some kinda template for all of US. We don't need to re-invent the wheel..... others have been down other horrid paths like the one we are on and we could perhaps "Stand on the Shoulders of Giants". I know some of us have media connections.... others have perhaps celebrity connects... still others have connections in the various fields of science.... We could start a thread for BRAINSTORMING these various ideas and try to organize in a cohesive manner to bring the much needed attention and funding..... I don't know... but I've never been exposed to such valiant, passionate and intelligent people before... maybe i'll start a post called Brainstorming on Grassroot Activism....
get it together people....
Xiblanque

Xiblanque -

For starters, I think we should try to organize a group to be ready to rally in front of the CDC in Atlanta, GA in May.

There is supposed to be an important meeting mid-May, where some in our little M-world think THE announcement will be made.

I think we should prepare for the possibility that it will be made, and will not be what we hope for...or worse....

Can we try to get I list of people from GA and surrounding states to participate?

No one is going to do this for us, sadly. We have to do this for ourselves.

Any takers? Now, you Floridians - I know who you are!!! lol

SS

[jonsi]

I would love to attend but the cost is too much for me since I have to fly in from New Mexico. I can afford the airfare. Renting a car and paying for a hotel for 2 nights puts me over my budget.

When is the exact date? If anyone offers to pick me up at the airport and offer a place to stay (or share the cost for a room for like four people?) , I am seriously considering going.

I have a few "M" phone friends that live in the Atlanta area. They are members of this board. I'm sure I can convince them to attend (maybe? ).

Let's get our act together!

In the white light,
~jonsi