lisa

[Guest guest]

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Are you going to be in the study too?

Debbi

MESSAGE FROM DR. McDONNELL At NIH IMPORTANT

Hi All:

I just got off the telephone with Dr. McDonnell, from the NIH study.

I know there have been similar messages, BUT she just asked me to please

post

this message to everyone now, on CEDA, for her.

They are VERY backed up & have at least 30 people that are waiting for phone

calls from them. She just wants you all to know that they will contact you,

but to please understand & be patient. They WILL get to you.

They are totally swamped & their coordinator/assistant will not be starting

to work with them, until the middle of September.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

That said, of interest, is that she wanted to know what " CEDA " is, how it

works & how she could actually get on to it & see if for herself! She is

fascinated & very impressed with the extent of communication between us,

the support

we provide for each other & of course, the speed at which information is

shared between us! And though " CEDA " is actually an abbreviation for the

Canadian

Ehlers Danlos Association & that once, years ago, there was a group that

emanated from the U.S., that we had all, long ago, made CEDA our home.

I explained to her that yes, it is a list on Yahoo Groups, but that it was

more akin to a " family, " which immediately made sense to her.

I did tell her not to be surprised by the number of messages on it, daily,

nor the number of people that regularly participate, from all over the

world.

I thought you would all like to know this, as I believe that it is a quite a

compliment. It showed me how obvious it is, to someone so busy, who did not

come to know of CEDA because she was looking for a list/support system, yet

in

such a short amount of time, she was able to pick up the amazing group that

we

have. So who knows, we may yet see her, at some point, on the list as well.

All the best, luv 'ya,