I met with the head of publications for National Arthritis Foundation

[Guest guest]

This is from Judy on the EDSers list. Thought you should all think

about this, and if you come up with anything, please reply to her!

From: " judith sobel " Date: Thu May 20, 2004 7:17

pmSubject:

I met with the head of publications for National Arthritis

Foundationyesterday. I had written to the foundation which is located

here in Atlantabecause they has so much obsolete and misinformation

on the web, Q and A andmailout brochures.I brought copies of

everything I had from EDNF plus copies of articles frommed journals

and the Vascular ED-RomI went over every error and provided correct

information. The Director, DanKendrick, assured me they would all be

corrected (including adding the CEDA, EDS Today and UK website links

to their web)Not only that, but the AF distributes a newsletter to

professionals in thefield plus internists and other health

professiohnals. He promised todevote an issue to EDS information!!!

He is setting up a meeting with me with the President, Dr. Conn, who

is aprofessor of rheumatology at Emory. I want to talk to him about

my idea ofhaving rheumatologists play passive exercise tapes in the

waiting roomsinstead of having us sit there and freeze in our chairs

while waiting to be seen.

He will also put me in contact with the American College of

Rheumatologists. They do not even include EDS on their list of

disorders. I will ask forthat and ask them to develop a CME on EDS

and add it to the boardcertification requirements. (I know -

unmitigated Chutzpah[colossalnerve])What else would you like the ACR

to consider ? PLEASE send me your ideasASAP. Also, if there is

anything else I can ask the president of Arthritis foundation, what

should it be?

Really need your input , folks. This is a chance of a lifetime!

Judy/Atlanta