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