<<Disclaimer: Verify this information before applying it to your situation.>>

Dear List Members,

In response to the summary from Michael Thorn on 'any press releases from the
major CD groups?'. I did respond to Michael personally as I was not sure what
he expected to see from his post of 'my message was-
Has anyone seen press releases from the major Celiac Disease groups related
to the Fasano study? I was hoping to see them shared online.'

Mike Jones, one of the List Serv owners put out a summary message to the list
and I felt Mike Jones covered the subject as far as the list community went
and that we were basically being asked to not jam the list with additional
input on the subject.

The following is one of the posts in Michael's summary;
'I do not understand what you expect from this or any other group that is
probably run by one or two people and a dedicated cadre of volunteers. They
cannot legislate what others do and the only people who would be informed by
adding to the website would be Celiacs and they have this information on the
LISTSERV. Perhaps I am naive but I found the CDF was my lifesaver when I was
diagnosed and needed help. I think their newsletter is informative and I
attend their meetings. I do not expect more than that. I bet they would
welcome your involvement and energy as opposed to the criticism.'

The National Groups provide the best service possible to their members with
the resources (people and funds) they have available to them. The List
provides a service of getting information to you instantly, right or wrong,
and oftentimes provides ways for people to research additional information
via the Internet.

I would like to suggest that if you are unhappy about the way a National
Group is progressing, why not get involved and offer to help them in some
manner that meets your needs? I am sure you would be well received by any of
them as they are primarily volunteer based organizations. The National Groups
are your access between you, researchers, legislators, etc., as well as many
other efforts. Just think about it, what would you have today if you did not
have these National Organizations breaking the way for you? I personally
would like to see the National Organizations form a Coalition (or something
similar) to have even more strength in some of the political efforts.


The following Seattle area newspapers had articles on February 11, 2003, as a
result of the national media blitz on Celiac Disease. I am sure there were
more, but these are the two I personally have seen.

The Seattle Times, Seattle, WA at:
http://archives.seattletimes.nwsource.com/cgi-bin/texis.cgi/web/vortex/display

?slug=celiac11&date=20030211&query=celiac+disease

The King County Journal, which covers many cities and towns in King County,
WA at: http://www.kingcountyjournal.com/sited/story/html/121208


Sincerely,
Nancy
A Dedicated GIG Volunteer
WA

*Support summarization of posts, reply to the SENDER not the Celiac List*