MESSAGE FROM DR. McDONNELL At NIH IMPORTANT

[Guest guest]

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,

[Guest guest]

In a message dated 8/25/2004 12:15:43 PM Eastern Daylight Time,

kdavis@... writes:

> 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!

And her application to join was approved this morning.

-Barb

That's wonderful! I just knew she would do it & am so pleased, as I believe

that both Drs. McDonnell & Francomano are 2 of those rare doctors who truly

care, not only about the work that they do, but care deeply about the people

involved, as well.

So if you see this Dr. McDonnell, we send you a hearty welcome, to our " CEDA

family "

All the best,

[Guest guest]

In a message dated 8/25/2004 12:15:43 PM Eastern Daylight Time,

kdavis@... writes:

> 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!

And her application to join was approved this morning.

-Barb

That's wonderful! I just knew she would do it & am so pleased, as I believe

that both Drs. McDonnell & Francomano are 2 of those rare doctors who truly

care, not only about the work that they do, but care deeply about the people

involved, as well.

So if you see this Dr. McDonnell, we send you a hearty welcome, to our " CEDA

family "

All the best,

[Guest guest]

> 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!

And her application to join was approved this morning.

-Barb

[Guest guest]

> 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!

And her application to join was approved this morning.

-Barb

[Guest guest]

That is great Barb!

Now we can *chat* with the source.

**** yea! As if she even has time to log on!***

Debbi

Re: MESSAGE FROM DR. McDONNELL At NIH IMPORTANT

> 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!

And her application to join was approved this morning.

-Barb

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

[Guest guest]

From: Barbara

And her application to join was approved this morning.

-Barb

**********************************

Hope she learns quickly how to stop mail to go to her email account Talk

about being overwhelmed! LOL She'll never get to all those calls.

[Guest guest]

In a message dated 8/25/2004 12:25:08 PM Eastern Standard Time,

c-clark05@... writes:

From: Barbara

And her application to join was approved this morning.

-Barb

**********************************

Hope she learns quickly how to stop mail to go to her email account Talk

about being overwhelmed! LOL She'll never get to all those calls.

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

LOL LOL LOL

Don't worry, I though of that. I was concerned about her getting to the

calls as well & also being able to get her work done too, (though I don't know

how

she does it all!)

So while she & I were speaking this morning & she asked me about CEDA, as I

had said earlier; What exactly it was, how it worked & how to join, etc., I

told her, BUT I also forewarned her that there could easily be 100+ posts on it,

per day. She was blown away. She said she'd really like to see it & join & I

knew she really meant it. So, I suggested that she check out the digest

form, so she could just scan the messages & not be swamped with individual

emails.

She was just so overwhelmed at the closeness that we have, the bond........

That's why I told her it was more like a family even though it was

technically a Yahoo group. And in fact she really did mean it, when she said

she wanted

to join. I knew she did, she sounds so incredibly sweet & genuine. Because,

it couldn't have been more then an hour, maybe less, after I spoke with her

about it & how to join, that Barb said that she had indeed, joined CEDA. Gosh,

I sure am glad I thought to suggest the digest to her & I hope that she did

do that.

Love you all,

[Guest guest]

LOL...It is a very good thing that was thought about....lol Talk about major

overload....lol

HUGGLES

Grace

EDS, It's a Life Thing

http://www.ehlersdanlos.ca/whateds.htm

Re: MESSAGE FROM DR. McDONNELL At NIH IMPORTANT

In a message dated 8/25/2004 12:25:08 PM Eastern Standard Time,

c-clark05@... writes:

From: Barbara

And her application to join was approved this morning.

-Barb

**********************************

Hope she learns quickly how to stop mail to go to her email account Talk

about being overwhelmed! LOL She'll never get to all those calls.

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

LOL LOL LOL

Don't worry, I though of that. I was concerned about her getting to the

calls as well & also being able to get her work done too, (though I don't know

how

she does it all!)

So while she & I were speaking this morning & she asked me about CEDA, as I

had said earlier; What exactly it was, how it worked & how to join, etc., I

told her, BUT I also forewarned her that there could easily be 100+ posts on

it,

per day. She was blown away. She said she'd really like to see it & join & I

knew she really meant it. So, I suggested that she check out the digest

form, so she could just scan the messages & not be swamped with individual

emails.

She was just so overwhelmed at the closeness that we have, the bond........

That's why I told her it was more like a family even though it was

technically a Yahoo group. And in fact she really did mean it, when she said

she wanted

to join. I knew she did, she sounds so incredibly sweet & genuine. Because,

it couldn't have been more then an hour, maybe less, after I spoke with her

about it & how to join, that Barb said that she had indeed, joined CEDA.

Gosh,

I sure am glad I thought to suggest the digest to her & I hope that she did

do that.

Love you all,