Re: NIH Study/Lana

[Guest guest]

Lana,

I think that a wonderful idea!

Hugs, S.

NIH Study

> 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

>

>

>

>

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

>