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I am going to vent but I would like to know what is being done about
obtaining research $ for CD.  I am wondering if we have too many
organizations and why we don't have one Celiac Foundation like MD, MS,
Cancer, Arthritis Foundation, Crohns/Colitis Foundation etc.  How many
celiacs are there nationally?  How many children celiacs are there
nationally?

I would feel more secure putting all the membership dues I pay yearly to
NORD (National Organization for Rare Disorders) & target the money
towards CD.

What are we doing nationally to raise $ for research?  These conventions
are all fine and dandy but how about a demonstration in Wash. DC to
advocate better FDA food labeling laws.  How are our Congressmen and
Senators involved in any of this?  I am tired of paying $1.69 for a
quart of lactaid milk.  I am tired of paying these phenomenal prices for
grain flours that are so widely available to us.  I am tired of shopping
by mail for my foods period.  I'm tired of researching what drugs are
safe and which aren't.  How can we sit back and let these companies tell
us they "can't supply us with a list of their GF products."  I have not
been to one meeting sharing these ideas on what we can be doing for
advocacy.

I ended up with duodenal cancer at 34 because of this disease.  I don't
know from day to day what is going to happen tomorrow.  My life has been
shattered due to this disease.  I have 3 children who could possibly
also be affected.  Are people making informed decisions that their
offspring could be celiac?  How many marriages ended up in divorce
because of this disease?  How many spouses have had it about up to here
just living with a celiac?  Which nursing home are you going to go to
and be served GF foods on a daily basis?  How many people died of cancer
and probably didn't even know they had celiac disease (lymphoma -
adenocarcinoma cases)?  How many comitted suicide because of celiac?

If we united our support groups together nationally we would have some
advocacy.  The energy we put into these daily conversations could be
exerted on accomplishing these objectives.  I'm willing to get involved
with a National Foundation to help with research $.  I don't have
experience in doing so.  How do we start a National Celiac Foundation?
I will summarize responses.
Elaine/Ohio