To all @ calls from NIH from Dr. McDonell Please try to be patient

[Guest guest]

Hi All:

I know how excited everyone is about being involved in this study. PLEASE

know that I personally spoke with Dr. McDonell last week. Near the end of the

conversation, she asked me to PLEASE post a note for her on CEDA, letting

everyone know that she would get to everyone that had been in touch with her.

And

then shortly after that, she also asked me how to sign up, to be on CEDA

herself. She actually signed up & posted a note of her own, on CEDA as well.

The basic problem is quite simple. Both Drs. McDonell & Francomano are

working very, very hard & doing several jobs at the same time. They already

have

the study in progress & are attending to people that are already there. They

also have additional work, beside this study. They are petitioning to get

additional tests added to the study. They have a secretary/coordinator that

will

be handling all of the scheduling, but she will not be available to begin

working with the doctors until the middle of September. They are doing their

best

& will get back to everyone.

I hope, seeing this all in print, will put you at ease. This is a series of

emails between Dr. McDonnel & me, after our phone call. It explains

everything in detail. I hope it gives you all some peace. I know it's hard to

wait

for that phone to ring, but I promise you, watching the phone isn't going to

make it ring any faster! I know you & I both know that, but somehow logic

doesn't enter into this at all. She knows that I & everyone is behind her & will

help. These are the emails that she & I exchanged:

_______________________________-

From: Boop4@...

Cc: McDonnell, Nazli (NIH/NIA/IRP)

Sent: 8/26/2004 11:54 PM

Subject: Re: from Dr. McDonnell regarding Connective Tissue Study

Dear Dr. Naz:

Welcome to our family. It's our pleasure to have you with us & want you

to know how much we appreciate, not only yours & Dr. Francomano's

interest, but your true kindness & caring, to us all. We all look

forward to a long, pleasant & productive relationship. Again, welcome!

P.S. I truly enjoyed our conversation & am very happy that we spoke of

CEDA & that you have now joined us. Will see you on Dec. 19th at NIH &

if I can personally assist you in anyway both before & after, please

feel free to contact me.

With tremendous gratitude,

C. Schoenberg, RN

North Central NJ EDNF

__________________________________________________--

From: McDonnellNa@...

Sent: 8/27/2004 8:29:00 AM Eastern Daylight TimeSubject:

Re: from Dr. McDonnell regarding Connective Tissue Study

Thank , see you in December!

NOW, THIS IS AN EXACT COPY OF DR. MC DONELL'S EMAIL TO CEDA. DON'T

WORRY!~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

In a message dated 8/26/2004 1:38:30 PM Eastern Daylight Time,

mcdonnellna@... writes:

Dear EDS'ers,

We have room for about 100 participants with a diagnosis of EDS in

our study. So far those of you who have written to us and called us

will all be able to participate. I have about 50 calls to make in

response to all the calls and emails I have received so far, so

please be patient with us as we are trying to organize this.

For those of you who are in financial need, we might be able to get

some help through an organization called " angel Flights " . I am hoping

this will work out since some of you live quite far.

We should be able to get you all scheduled in the next week or two so

don't get anxious if you don't hear anything for a few days!

Cheers,

Dr. Naz

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

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

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

In a message dated 8/30/2004 5:07:35 PM Eastern Daylight Time,

pmelcher@... writes:

Mark --

Rhea's right -- I haven't gotten my call back yet either (and I worry about

it, too!!!) But it hasn't even been a week yet -- I guess I'm really just very

excited about it so it's hard to be patient!!

Patti

Re: Still no NIH call...

Mark,

It's all right! I haven't got a call back either, and don't expect

one for at least a week if not 2 weeks. They posted an email a few

days ago saying they are incredibly bogged down with over 50

inquiries and to give them two weeks time. We'll all get out turn

I'm sure. Back to the 'patients being patient' thing huh ;-)

Hang in there Mark. I know, I too am kind of afraid I somehow

won't 'qualify' for it or it will fall through somewhere. I'm sure

it will work out in the end. Hang in there and patience my friend!

(((HUGS)))

-Rhea

All the best,

Ehlers Danlos Syndrome - It's a Way of Life