<<Disclaimer: Verify this information before applying it to your situation.>>
You've all been very patient with me, so may I take a few more minutes of
your time, please?
I contacted a friend in Washington, DC, who has been a lobbyist and
international speaker on the topic of diabetes. She was just sent to an
international meeting on diabetes, in Sweden, all expenses paid by the
National Diabetes Association or Foundation, or whatever it is called, so
you know she has some credibility.
She says that we should not bother to send e-mail to the White House, as
there are so many people who read and filter the mail it would never get
to the President.
Her suggestion is that we send a really thoughtful letter to the
Washington Post, explaining about the newspaper article that said that
President Clinton has wheat and milk allergies, listing the reasons that
we are concerned about The President's possibly having celiac disease,
telling the major symptoms of the disease, and then giving the name of an
expert on celiac disease who could fill them in on celiac if they want
more information. We say we are writing as representatives of the 1900
members of the CELIAC LIST, who are only a fraction of the people in the
USA and around the world who have celiac disease. The Post is read and
picked up by every major newspaper in the country. It would be quite
possible that the item would be picked up.
She further suggests that we do not mention the need for national
publicity for celiacs, lobbying, money for research, etc., as that would
sound self-serving, and the newspaper would "just put us at the end of a
long line of people who are trying to get into the Post". She says that
if the Washington Post asks the question about whether or not Clinton has
celiac disease, it will be headline news. If WE ask, it will be a voice
in the wilderness. We can, however, say that the LISTERV exists because
the disease is so little known and underdiagnosed, and that is why we
thought it important to write to them.
We should send copies of the letter to President Clinton, the chef, and
his physician (she says our Congressman's offices can give us that name)
so that he will have time to think about his answers before the Post
reporters start knocking at his door. After all, we know he doesn't want
to look like he has missed a diagnosis...he would be the first...right?
So he can say he has been looking into....
Now the question of an expert who might be willing to be the reference
point. I would like to suggest that Dr. Fasano and/or Dr. Murray be
named, but of course we would need them to say yes. Are you reading this
mail, Drs. Fasano and Murray? If so, I'd love to hear from you. If you
are willing to write this letter to the Post and take on the whole
project, I would be most pleased.
A long post - sorry, there was no short way to include the necessary
information. Just think how long it took to write! Would those of you
who find any merit in this please send me a response, so I can decide
whether or not, or when or how to proceed. Thanks.
Gayle Kennedy [log in to unmask]
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