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Some of these comments have been edited slightly.  Though the
>A few of these responses have been edited slightly. The honestly in
each is greatly appreciated, but I don't want to
>add to any communication problems.

My original post was meant to stimulate discussion among the
leaders.  Maybe they will take it from here. I am willing to help in any
way I can.  Please don't let this idea die!

>
>Jacqueline Maxwell
>
>                         # # #
>
>I agree.  Some things I would like to see accomplished.
>* restaraunt carry gf free items and indicated on the menu
>* LOTS more gf items available in local grocery store
>* LOTS more gf items made
>* ALL manufactures labels ingredients detailed
>* Mandatory celiac testing for children at age 3 or 5
>* Cost of gf items to be more "normal"
>
>                         # # #
>
>Cynthia Kupper, Executive Director of the Gluten Intolerance Group
>(GIG) has tried for years to get the National Organizations to
>consider a Coalition of the national groups. That would let each of
>them do their preferred projects and goals, but when needed, speak
>with one voice as a unified organization.
>Much to Cynthia's regret, she has not been successful in this
>effort, but with your message perhaps the other National
>Organizations will see it and understand that they need to work
>together under one unified organization.
>
>GIG and Celiac Disease Foundation (CDF) have worked some
projects
>together, and this is a beginning of doing things together.
>To help promote the unified voice, GIG is partnering with other
>support
>groups. One way to help get some consolidation of efforts is, if
>you have a
>group, become a partner with GIG.
>
>If you would like GIG partnership information, please contact
>
>Gluten Intolerance Group
>15110 10th Ave SW, Suite A
>Seattle, WA 98166-1820
>
>Telephone:          206-246-6652
>Fax:                     206-246-6531
>Website:              www.gluten.net
>Email:                 [log in to unmask]
>
>                           # # #
>
>Every year someone suggests this.   Excellent idea.   However, very
>difficult to accomplish especially with the feuds  that have
>developed
>over the last couple of years between local support groups and
>national organizations.   I have not seen any -one- "national"
>organization suggest this.   In fact instead of consolidating  I
>have
>seen more splintering and one additional "national" organization.
>
>                           # # #
>
>All I can say from my past corporate experience is that any good
>leader or group will always think of themselves as the true answer.
>No one would want to relinquish... there is no
>such word in this situation... compromise and focus are the words
>to us and
>even that is a stretch.  If you have ideas  jot them down  in the
>form of an
>agenda for disucssion and ask for agreement on the agenda first...
>once
>people agree about what they want to agree about  thats half the
>battle.
>
>                            # # #
>
>I am too new to know the issues about each of the celiac orgs. but
>I sent money to the Celiac Foundation last year and would be happy
>to join an overall org.  That may be hard to get the leaders of the
>different organizations to merge.  Do you have a list of the celiac
>organizations and the strenghs (and weaknesses) of each?
>If you try to give some background information and then collect
>information on the S & W of each, then we might uncover the
>"issues" blocking this idea.
>
>                            # # #
>
>Jacqueline,  HERE HERE!  I agree and have been saying this for the
>past five
>years since my daughter was diagnosed.  I do belong to one of the
>organizations and I am on the board and have been lobbying them to
>unite
>with the other organizations to create a strong voice for our
>cause.  I
>think it is about time we all became one united voice.
>
>                            # # #
>
>I do think that a consolidated voice might help us be heard . . .
>but I am new to the Celiac world, and am not sure what this would
>entail.  Surely, each of the individual groups have served a great
>need that should continue to be addressed.  Perhaps we need an
>"umbrella", of sorts?
>
>                            # # #
>
>We have long agreed with you.   However, have you ever met the
>different leaders and stopped to analyze their
>personalities?  Therefore I hope you
>can accomplish the goal but I doubt it.  I have no solutions.   We
>are
>not happy that various groups have sprung up over the last years
>such
>as Friends for Research out of Milwaukee.   We feel it should be
>one.
>But if the current organizations are not willing to spend money on
>research, what does one do?   The lady out of Milwaukee started it
>with her own money for the sole purpose of supporting
>research.   One
>must say in two years time they have helped organize walks which
>none
>of the other groups have ever done.   So what can one say?
>
>On the other hand, if you look at any other disease, you will also
>see
>many multiple groups.   This is America and one cannot deny them
>their
>status.  We support more than one group and only hope they can
>cooperate on a legislative issue.
>
>                            # # #
>
>We cannot have a unified voice until we all have unified agreement
>on a
>gluten free diet. There are many differing views on safe foods,
>e.g.
>vinegar, alcohol, wheat starch.  I do not want to eliminate a
>product
>because it is listed as not gluten free when the offending
>ingredient is
>really OK.
>
>
>
>

*Please provide references to back up claims of a product being GF or not GF*