NIH Study

[Guest guest]

Hi everyone,

I just wanted to let you all know that Dr. Nazli just called me to

make sure she had everything she needed for when I go, which will be

Oct. 21-22nd. She told me they are SWAMPED with phone calls and

emails! I said, " I bet you're about to lose it, aren't you? " , to

which she replied, " Yes, I am! "

So, I just wanted to ask everyone to be patient! If you JUST sent

your email or called recently, give them a week or so to respond to

you. Then if you still haven't heard, you can check again. I had

sent Dr. Nazli an email with the dates last week, Thursday or Friday,

and she ended up calling me back 3 times just today - and I know it

was because they are so busy that they have a hard time doing

everything at once, remembering where they were, etc. I can't

imagine how nerve wracking it must be for them right now, as they are

being bombarded by all of us! I'm sure it's what they WANT to happen

(to have all the volunteers) but it's just that they sort of came all

at once!

Anyway, Dr. Nazli also told me she would be in touch with me once

more before I leave for there, and any records I can bring would be

helpful. Over the phone, I gave her my social security #, height,

weight and birth date, as well as any special needs I may have, or

any allergies to food I may have.

They are VERY nice people, so I know we will all treat them with the

utmost respect - if only for DOING this study, and trying to find a

way to help all of us!

You know, I just had a light bulb go off in my head - around a year

from now, what would you all think about sending them a gift, like a

lovely plant or something, for doing the research? It could be a

donation, in the amount you wanted. IF you think this would be a

nice idea, I would be glad to head it up. Let me know what you all

think.

Thanks!

Love Lana

[Guest guest]

> being bombarded by all of us! I'm sure it's what they WANT to happen

> (to have all the volunteers) but it's just that they sort of came all

> at once!

Unfortunately, they are also getting FAR more EDS participants than Marfans

and Sticklers. They really need about 100 for each of the different

disorders, so they are hoping that something can be done to get the word out

to these other groups as well.

-Barb