Re: EDS Awareness Project (long)

August 29, 2001

Hi Everyone,

I apologize for not jumping into any of the discussion lately about the big

project and ideas ( or anything else actually!) but I was gone two weeks and

then the very next day started back to school/work so it's been crazy around

here. AOL actually started telling people my mailbox was full!! I think that

happens at 1000!! I deleted about 848 last night!! SORRY , BUT I saved all on

the campaign!!

Everyone has been so busy and I'm so impressed with all the creativity and

thought everyone has put into this!! Barb, thanks for summarizing everything

so nicely!! IT was a big help. I , too voted for February because I think it

would be impossible to get much going before then and I think we really want

to make a strong statement!!

I love everyone's ideas. I wasn't able to get to website with info but what a

great idea and thanks for doing that, Joyce!!

I agree that we need to really put people in charge of certain things but

also count on folks locally to carry certain things out. If certain formats

were established for example for contacting local newspapers, TV stations,

etc. and then we only had to follow the guidelines, it would be helpful.

I think we need to also look at what we can do nationally. How can we

advertise a special day? How can we get the info in the right hands like

national TV ? I know everyone is asking these questions and those of you

with nonprofit backgrounds can maybe help supply some of the leadership. I

feel like if I contacted one of the local TV stations, they might be willing

to run a story. They are always doing that sort of thing. Maybe getting one

of the knowledgable and sympathetic docs we all know to go along with it too

would help. I know Sara's rheum. is always on TV about something and I bet he

would be willing to help. In fact, she sees him this month so I will pitch

the idea to him and see what he thinks.

Sorry to have rambled on so but I am just so excited. My boss made a crack at

the lunch table today that my having to find a new doctor would make some

unsuspecting M.D. rich with my business!! I know she thought it was funny and

part of me can see that and heck, I've said similar things. BUT, she would

never have said that about faculty that have MS or cancer or other things. We

have to do something!!

I'm glad to be back home!! Missed you all.

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