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I was part of the group that met in Chicago to form a united
group of celiac leaders.  Indeed, there was subterfuge and
painful disappointment to those of us who ended up trying to
implement the ideas and desires of this remarkable, spontaneous
gathering.

The purpose:  Lots of discussion on this, which boiled down to
the need for a single, strong voice to promote a consistent and
defensible body of knowledge, to give celiac disease a national
prominence and awareness and to provide lobbying efforts,
effecting good regulation and investigative, scientific study.

Practical problems and questions arose:
(1)  The need to incorporate:  Where, which state.  Criteria for
forming a governance board and evaluating performance.
(2)  Funding:  It will cost money and a lot of it.  And will
have to be continuously supported.
(3)  The form:  As a new group of individuals and groups or as a
group of groups.

The landscape has changed significantly since that meeting.  This
listserv has provided an excellent forum for celiacs around the
world for individual support. New publications, websites and
purveyors of GF products are popping up all the time.

Nothing helps the newly diagnosed celiac better than a local
support group or contact.  In this case, it does not matter to
which national group the local chapter belongs or, for that
matter, if the local group is independent.  What is important is
that the leaders of the local group avail themselves of
information from several sources and that is easily accomplished.

From my perspective and experience, FIRST I would like to see all
the leaders of the national groups agree unconditionally to go
forward with a coalition, with a common goal that can be
sustained by each of them.   SECOND, using only that common
statement of purpose, convene other group delegates to give shape
and form to the coalition.

Any other procedure will do nothing more than create another
national organization and muddy the already turbid waters.

                                                    # # #

I'm not an officer in any of the celiac groups, but I belong to two of
them,
and another lady in our local group has joined a third so our local
group can
have input from all three. I also print out and index informative letters
written to the maelstrom group so a person can quickly find a
comment on a
specific problem.
What I notice is that there are not yet definitive answers to many of the
questions concerning celiac disease, and even the experts do not
agree. The
organizations each have a little different focus, and I treasure each of
them. The writers to the maelstrom listserv often disagree, and, as is
true
of myself, we don't always know all that we think we know. Still, I
treasure
the listserv, and it is not all that difficult to come up with some pretty
solid information that can be very helpful.
I would not like to have just one organization. I think the areas of
disagreement are really rather minor, and are usually worked out with
time.
When we are asked to speak with one voice, whose voice is it?
We Americans value our freedom and diversity. Take that away and we
may not
progress so very fast.

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