<<Disclaimer: Verify this information before applying it to your situation.>>

Hello to everyone in this celiac community!  I'm new to the list, just over
one week online now.  I love being able to reach out to parents of celiac
children and am tuning in twice a day.  Thanks to all the great advice out
there and to the keepers of this forum.  It is one of the best tools we have!

I am a 33 yr. old celiac who went undiagnosed for decades, and thanks to the
ignorance of the medical community in my area, I am the mother of a
three-year-old celiac, he who has yet to be diagnosed.  Because of this
situation, I was spurred to launch the "Celiac Awarness Campaign" in my
state.  I want to briefly share this experience with you all, so that you may
take up the effort in your own state if you choose.  In my state, the effort
is starting to snowball, and we are starting to receive the appropriate
attention.

Armed with data from the Center for Celiac Research, and my family's own
personal story, I started by lobbying my Governor's office, to issue a
proclamation declaring October 1999 "Celiac Awareness Month" in my state.  As
most of you know, October is also National Celiac Disease Awareness Month, so
I used this information as well in receiving the proclamation.  Once I
received the signed proclamation (THANK YOU GOV. HOWARD DEAN!) I called the
NBC, CBS and ABC affiliates in my area.  So far, we have had reports on CD
aired on WPTZ Channel 5 (NBC), and WCAX Channel 3 (CBS) and a report will air
on WVNY our ABC affiliate on Oct 5th or 6th.  I have also faxed press
releases to major newspapers in my state.  A report appears today in The
Burlington Free Press, and on Wednesday in The Vermont Times.  I hope some of
you can get copies.  I also called some radio stations, and the President of
my support group and I were on talk radio this past Saturday, and will be on
"The Mark Johnson Show" on 1390am, WKDR in Burlington on October 12.  Dr.
Alessio Fasano from The Center for Celiac Research is going to be on the show
with us!  It should be exciting.  This is a call in show, so anyone in the
listening area w/ a question for Dr. Fasano should call in!  It's at 9am, and
the nuber is 802-655-6753 or 1-800-286-9537.  I have also sent information
about our support group, and celiac disease to most of the health food stores
in my state.  I've also requested and received a diskette from the Vermont
Medical Practices Board including names and addresses of all primary care
physicians and pediatricians in my state.  Now I can create a merge letter
and send them each info. on CD and/or announcements.

  We are working to bring Dr. Fasano to Vermont to conduct a blood screening
of 1st & 2nd degree relatives, and those presenting strongly w/ symptoms of
CD.  I contacted our Vermont Health Commissioner and explained that probably
a couple thousand Vermonters were undiagnosed celiacs.  I am very grateful to
my Health Commissioner, Jan Carney, MD and have her support in bringing Dr.
Fasano here.  We continue to work with our University hospital here in the
hopes that they will either officially invite Dr. Fasano themselves, or
provide phlebotomists for the blood draw.  This has been the hardest part of
the whole campaign.  We have been met with resistance and a large
bureaucracy.  Please keep your fingers crossed on our behalf.  The media
blitz in the past month, and the coming month, may give them just the little
shove they need!  The Vermont gastro. club IS having a celiac expert come to
VT to lecture on celiac disease this December, so we are grateful for that.

   We are pleased that all of these reports have resulted in a very sick baby
getting diagnosed, and now after receiving the GF diet, making a complete
turn around.  We reached out to many celiacs who were newly diagnosed, and
looking for support and information.  We also reached several celiacs who
thought they had something very rare, and had never met another celiac (that
they knew of.)

   Please do contact your Governor's office for the Oct. proclamation.
Create a short, to-the-point press release and go the the media.  This is big
news.  American medical texts are outdated.  Celiac disease could be
occurring at a rate of 1:300 or even 1:250 Americans.  Every day that goes
by, a child is suffering from malabsorption, like they live in a third world
country.  We all need to pull together to get these children diagnosed, in
order to avoid the serious complications that come from celiac disease.  I
know, I've been there myself - - but that's a whole other story!

Best of health to you all - and get to work!

Carol Jones
Burlington, Vermont