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These message flowed in and it seemed appropriate to share them. They seem
to speak powerfully on their own.
The question seems to be-are the "leaders" paying any attention?

my message was-
Has anyone seen press releases from the major Celiac Disease groups related
to the Fasano study? I was hoping to see them shared online.

I did get email from Danna Korn of R.O.C.K. with an excellent press release.
Michelle Melin-Rogovin of the Celiac Disease Center at the University of
Chicago also contacted me with a link to their press release. Excellent
work, professionally done. (To see their materials go to www.uchospitals.edu
and look for the celiac link (bottom right button).



Responses with minor editing of names,etc.-

You are so right! Can you believe that the University
of Maryland and the U of C were the only two study centers that did any PR?
---

This is the primary reason that our local group has
not joined with a national group.  Thank you for
raising the question.

Why bother joining a national group when they do so
little to help the cause.....

This is also the reason why we need ONE NATIONAL
CONSOLIDATED GROUP.

Unbelievable.......
-----
Well sure.  They all should be out there pounding the drums with this news.
------

This is huge news.  I don't get why the big organizations are not bombarding

the media outlets -- Dr. Sanje Gupta, et al -- with press releases.  Can
people be that territorial?
Or unfazed by Dr. Fasano's study's significance?

Puzzled
-------
well the major celiac groups seem to be made up of celiacs and volunteers,
so
probably do not have "medical" credibility that the press is looking for.
------
The Leaders of alll the Celiac Groups have all been in close contact with Dr

Alessio Fasano re the Publication of his study---that we just received
yesterday. I spoke with him on the phone a few days ago. We will all be
meeting with him in Baltimore on March 21st.

I realize that you are impatient for up to date knowledge, but give us a
chance for the CSA Medical Advisory Board to look it over and respond.
--------
Yes, Michael that is bothersome, and disappointing
------
I'm glad you're raising that issue.  If the impact of the numbers from
Fasano's
study is a voluminous increase in the work for local support groups, they'll
need
a lot of help from the nationals.  I'd like to think they're crafting a
response,
but they've had enough time during the study to do that and then just plug
in the
numbers. No excuse.

We really do need a national presence -- and we'll never get that with a
coalition.
-------
yes, it bothers me. I thought that at least a part of the "mission" for the
big CD groups was to promote awareness. Here's a big chance for them and
where are they??
-------
I, too, have been wondering about any public announcement of the Fassano
study.  I first heard about it in the San Francisco Chronicle, and I'm
excited about it, for the reason I suspect some friends and relatives may
have CD.  I'd like to see the Fasano study expanded to indicate such
otherwise "minor" symptoms as heartburn, thyroid, passing gas, etc.  The
major CD associations need more than a "nudge" from us to pick up the
momentum towards greater public awareness.  Perhaps a memo addressed
directly to them to give them the idea.
------
I do not understand what you expect from this or any other group that is
probably run by one or two people and a dedicated cadre of volunteers. They
cannot legislate what others do and the only people who would be informed by
adding to the website would be Celiacs and they have this information on the
LISTSERV. Perhaps I am naive but I found the CDF was my lifesaver when I was
diagnosed and needed help. I think their newsletter is informative and I
attend their meetings. I do not expect more than that. I bet they would
welcome your involvement and energy as opposed to the criticism.
------
Yes Michael, it most certainly does . My sister told me two days ago that
there was an article about CD in our hometown newspaper, the St. Petersburg
Times (probably one of the best papers in the country - bar NONE). Then a
friend told me that she had heard about CD on CNN this morning. I have
SCOURED both websites to no avail....I couldn't find anything. YES, THIS
DOES BOTHER ME. And how come "group" in Seattle is not weighing in on
this????
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