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

Cynthia Kupper, GIG Executive Director, does not monitor the patient portion 
of the Celiac ListServ. She has asked that I post the following message for 
her.

Nancy
Seattle, WA


I recently read the posts about forming one national group and would like to 
share my thoughts. First, when you run an organization, you must think of the 
success of that organization, otherwise you'd be out of a job. I was hired to 
make GIG successful. When I took the job I took it very seriously. I also 
know that the world of celiac disease is changing and that where once support 
groups were the 'know it all' and 'final word' on things like the diet, that 
is not necessarily so today. There are experts in the field and they should 
be looked to for these answers.

At the same time, some of us do have dreams of unity, whether that be one 
organization, or as a coalition of groups. I have carried this dream for a 
long time. I do know that if it were one organization, it must have a new 
identity. It can not be GIG, CDF, or CSA. It is possible that it could be led 
by one of the current leaders, but I am not sure that is best. It is hard 
sometimes to look to the good of the larger community rather than your own 
interests (in this case each national group vs. one group), but that is what 
does need to happen. I for one can say I am willing to work for unity of the 
groups. I have wanted to take action before, but have been dissuaded because 
I run one of those groups.

I try not to let ego get in my way. I am proud of what I have been able to 
do, but I am able to say I don't know it all, or am right all the time. I am 
not afraid to try something even if it fails (there is success in failure if 
you learn from it). I have even been known to apologize publicly for mistakes 
I have made in judgment.

I want a single national group as much as anyone. I have celiac disease and 
selfishly want what is best for my personal health. I have never been in this 
for me as a leader, but for all those persons with gluten intolerance. I do 
not think of myself as needing a spot light or trophy -- if I have made a 
difference those whom I have touched will know.

So with those thoughts, I invite the other patient support group leaders in 
the country, whether you are a national leader or a local support group 
leader to agree to meet in the Spring of 2003.

We can find a location, a facilitator, and set out to establish how we can 
work together. I only recently found out, the last time this was tried, it 
was met with the appearance of energy and excitement, but was being 
undermined behind the scenes. I hope that those who would choose to do this 
can come together with open minds and a true desire to work together. I 
suggest if this is not your agenda, then you may not want to join this 
effort.

I suggest this meeting initially only include the patient support leaders. As 
one researcher said to me "…the table has more than one leg but each has 
their own agenda, needs and goals." Food companies, researchers, celiac 
centers, and for-profit companies all have agendas and that could muddle the 
initial work between support groups. Once we have come together, then we can 
decide how to work with the other 'legs of the table.'

Possibly someone has a facility in a central location they can donate the use 
of the space in order to keep expenses down.

Is anyone else interested?

Cynthia Kupper, RD, CD
Exec. Director - Gluten Intolerance Group

It is only in risking that we are able to make a difference.

Cynthia Kupper, RD, CD
Executive Director
Gluten Intolerance Group

Speak with One Voice
Be an Advocate!
Advocate for unity amongst the USA celiac organizations.

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