Great News from my Dr. and for all with RP.

January 26, 2002

Hi everyone. I am so far behind on reading my mail. I have a rotten cold

and sore throat and just haven't been on line since I came back from

Stanford. I hope to catch up by tomorrow.

Now the GOOD news. At Stanford you see a fellow (dr learning to be rheumy or

other specialist) and an attending Rheumy.

Thursday my attending was a Dr that was going to go to work with Dr. Buckner

but decided he liked sunny Calif. better. LOL He said her center was a work

of art and that he was doing research at Stanford and basically working under

her. (He isn't getting funded from her, but doing research under her

guidelines) I told him the Dr B is working with our Foundation and asked if

he would like to too. (Also told him maybe we could help fund his research

as the Foundation grows). He said yes to all and gave me his e mail addy and

told me to contact him about it when I talked to the board. He told me their

latest research that they are working on. Said it was really " HOT " . It is

helping to find the cause of RP, started with an 'M'. Dummy me was so

excited I forgot to write it down. I will email him and ask for a detailed

letter on his research and will send it to the Foundation Board. He really

thinks there is hope of finding out more about RP real soon.

Well, I just had to share that good news to you all. This does give us a

little hope. We need more drs like him and really interested on the research

end. When he left the fellow stated that after seeing me and hearing about

RP, she too wants to go into the research end too. (They do both there, just

like Dr. B.....research and seeing patients). I will also ask if he needs

any of us for any trials he is conducting and let you all know what he says.

I think most of us are willing to give a little blood or answer a few

questions to help find a cure.

This is WHY we need everyone's support in the Foundation. We can help to

fund any research that is going to find a CURE!!! We are ALL looking for the

same thing.

I hope to get all the email answered soon.. You all take care and those that

are sick now you are in my thoughts.

hugs

Oh BTW.....everything went fine at the visit. LOL He did run a lot of blood

tests, Anti ENA, Anti DNA, RF, Aldolase, CK total and Cyroglobulins (for this

they had to use heated blood tubes, never had that done before.) And my bone

density test came back fine. So it was a good visit.

Recommended Posts