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Dear Amy -- and other list members who, understandably, entertain the hope
that the Prsident could somehow be induced to become a spokesperson for or
affiliated with efforts to raise the general level of awareness about
celiac.

I have written some of you privately; this time I think I shall address the
list as a whole and then shut up about it.

I am a journalist with many years' experience in the national media
(network television). My experience, for whatever it is worth, that it
fruitless to invest time and effort into soliciting Presidential support
for a celiac-related cause.

First, wheat allergy (which Clinton evidently has) is not, as we know, the
same as celiac. Because Presidential health potentially bears on national
security, his doctors research potential causes and effects much more
thoroughly than do our doctors research our cases.

I am not there, I am not a doctor, and I have not seen Clinton's medical
records, but it is highly unlikely that the doctors to a President who is
allergic to wheat have not thought of and tested for celiac in their
patient. Because most doctors do not know much about celiac does not mean
they are unaware that it exists. Anyone who has been reading the basic
medical journals in the past few years (New Eng. Journal of Medicine, for
instance) knows that celiac exists. Surely, at least one doctor on the
President's medical team reads that journal....in fact it is reasonable to
assume that they all do.

Second, this President has been particularly reluctant to release his
medical records, and this White House is particularly defensive on issues
of the President's health.

Third, no politician wishes to become the poster child for any disease;
disease is associated with weakness--not the image you want if power is
what you are after. Please do not misunderstand and think I am saying that
disease IS weakness. Rather, this is a matter of perception vs. reality.
But as we know, irrespective of which party is in power, perception IS
reality in D.C.

Having gotten several non-profits/causes of one kind and another off the
ground myself, I know how much work is involved.....and I would hate to see
my celiac listmates expend time that none of us has enough of on a cause
that is so unlikely to bear fruit. I am sorry not to have an alternative
course of action to suggest; I know the my kind of response can be
irritating and frustrating; please believe that I offer my thoughts out of
the hope that my experience can save someone the frustration of wasted
effort.

Sincerely, Mary Brown
NYC