Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Hi , The EDNF was the only EDS group they knew of. I told them I was in both. I started here because this is my family. I was going to put it on EDNF and the other boards in another week or so. They seem a bit overwhelmed at the moment from this group. This research benefits all of us, the faster we get that 300 people enrolled the better. Part of the problem is, the hospital floor being used for this has lots of different research programs all going on at the same time. They only can do one or two at once on this project. So it's a slow process of arranging dates to fit people in. Sept. 1st they have a new person being hired to help move all this along. Right now the Drs them selves are making the arrangements. So go ahead and put it on EDNF and all the other boards, I was trying to make it easier on the Drs by waiting a bit longer. Do you have all the needed info to pass along? I'll be glad to pass it along to you if you need it. I'm sure the Drs would appreciate if it waited till Sept 1st though. Cindylouwho Re: I have to NIH In a message dated 8/22/2004 10:04:20 PM Pacific Standard Time, c-clark05@... writes: DR Francamano and Dr McDonnell said they knew people were having a hard time finding them for the protocol. So I said " Do you want me to announce it on CEDA? " Wondering why they didn't post it to the EDNF site? I got 140 responses to our meds survey posting it there. Before I suggest it, does anyone know any reason they wouldn't want to ask the EDNF membership??? Liza Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 I sure hope this new person they are hiring at NIH is coming in already trained!! Cindylouwho Re: I have to NIH/ I'm sure they'd be glad to get it up on the front pages, and then we'll mag if needed in the members' postings Liza Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 I sure hope this new person they are hiring at NIH is coming in already trained!! Cindylouwho Re: I have to NIH/ I'm sure they'd be glad to get it up on the front pages, and then we'll mag if needed in the members' postings Liza Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 No kidding, Cindy! I sure wouldn't want to be in that position!!! Love Lana > I sure hope this new person they are hiring at NIH is coming in already trained!! > Cindylouwho > Re: I have to NIH/ > > > I'm sure they'd be glad to get it up on the front pages, > and then we'll mag if needed in the members' postings > Liza > > > Quote Link to comment Share on other sites More sharing options...
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