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Dear List Mates:

It is time to UNITE all of the celiac organizations.  Please check my
posting in the archives dated April 24, 1998.
http://maelstrom.stjohns.edu/CGI/wa.exe?A2=ind9804D&L=celiac&P=R2161&m=14200

Where do we stand right now in an effort to raise national celiac awareness
and raising funds for celiac research.  Advocacy speaks in number.  Research
money speaks in numbers. (I am sorry but back in '98 I was so fed up with so
many organizations I said I wasn't going to join all of those organizations.
I would have rather given my money to NORD.  How many other celiacs out
there may feel the same way.)  Unless of course maybe you have one of those
organizations in your own STATE.  Well I don't.  Please don't misunderstand
me either.

  The celiac organizations are doing a great service and I can highly
praise all of their efforts, volunteering, hard work and dedication.  I
just feel this hard work would produce greater results under ONE
organization.  Are the celiac organizations working together and
communicating and sharing information?  I don't know because I don't
subscribe.  Maybe someone can tell me.  Can someone tell me how many
celiacs have another autoimmune disorder with celiac?  The celiacs are
not being served in a manner like other NATIONAL ORGANIZATIONS.

I am making a suggestion on how we can all UNITE, pool together needed
research money for a "cure", and have a strong enough voice to be heard in
the government and the media.

I would like everyone's feedback on my proposition and I will post a
summary.  Also any suggestions that I may be lacking would be appreciated.

Dr. Fine has a non-profit Institute that will address all celiac, food,
immune, autoimmune, and nutritional issues, leading to overall physical,
spiritual, emotional, and mental health.  Would all of the celiac
organizations like to pool their funds into Dr. Fine's Non-Profit
Intestinal Health Institute?  We could have all celiac information
disseminated from this National Institute.  If every celiac paid a
nominal yearly fee to this institution, imagine the research money,
advocacy, fundraising, awareness, testing, and information we could
have.  I know for a fact that if we continue the same way with all of
these organizations you are not going to see research or a cure.  You
are moving too slowly.  You are waiting for all of these people to get
tested.  I have been battling this too long along with others and not
seeing anything.  NOW IS THE TIME TO CHANGE ALL OF THIS.  Celiac disease
is a chronic illness and gluten sensitivity appears to be the
trigger for most autoimmune diseases.  The celiac children are suffering.
35% of celiac children have a second autoimmune disease by the age of 20.
WE NEED RESEARCH. 1:225 people have celiac disease.  Up to 40% of Americans
have gluten sensitivity.

Please let me know if you feel this is totally out of line and/or
unworkable.  If something is not done about this situation you will never
see a "cure" for this disease.  We may as well wait for another country to
come up with a solution.

Thank you for listening to my opinion.

Thank you for listening to my opinion.
Elaine
[log in to unmask]
P.S. Dr. Fine has a copy of the video of his current talk available from the
www.intestinalhealth.org for $10 if anyone would like a copy.  All proceeds
go into the Intestinal Health Institute Organization.