NIH

January 30, 2004

I had an email today from Dr. Clair Francomano at NIH re: the EDS study. It

looks like the last thing that needed the new approval has finally gone

through for real this time! She has b een so patient and is so excited.She has

again asked me to be the first one seen which is so funny as I was the first one

she saw when she first started after the mmove to s Hopkins.

This might be a good time if any others are interested in seeing her to get

their names in there. It is not a treatment protocol but a " natural history

" one. My experience in the past when it was in Bethesda was that I did end up

getting plenty of treatment and lots of testing done as a result of being seen.

It also carries a lot of weight when you can say that you are being seen at

NIH. She was head of the study when it was at the Clinical Center in Bethesda

and

is a wonderful caring individual. She will also be speaking at the conference

this summer. She doesn't know that I am drumming up business and I know they

have a long lilst of folks but I thought it might be a good time if anyone was

interested.

I also heard from the people with Dr. Goldstien doing the POTS studines at

NIH today. They are still trying to figure out a way that I can/will be a part

of the month long study that they have going on wihtout my having to stay

there for a whole month at a time.I really doubt that it will work out because I

refuse go off my pain medicine just to be a guinea pig!! I would be able to

work with the pain clinic people though which would be a big plus and if there

are things that Clair Francomano would want done, that could be done at the same

time..There are so many resources that the pain andpalliative care clinic

have to offer and they were the ones responsible for me getting a lot better

pain

control going.

Well, I just someone might be interested in these studies.

Take care,

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