The listowners are very pleased to distribute the following letter,
regarding a research effort to -- for the first time -- REALLY establish
the prevalence of Celiac Disease in the USA. It is the first time we
have directly endorsed a fund-raising effort, which shows our belief in
the importance of this research.
We have attempted to only send this note to the USA subscribers to the
CELIAC e-mail list. (That is one of the reasons we didn't just send it
to the e-mail list address for normal distribution.) Some non-USA
subscribers may get this note due to the limitations of the internet
e-mail naming process; we apologize if you are one of these subscribers.
Please send any replies to the contact listed at the bottom of the
letter.
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MEMO TO THE CELIAC COMMUNITY
FROM: Annette Bentley, NJ Joanne Hameister, NY Bob Levy, MD
Phyllis Brogden, PA Caroline Harlow, DC Jim Lyles, MI
Sue Eliot, WA Marge Johannemann, KY Mary Neville, PA
Bill Elkus, CA Mike Jones, FL R. Jean Powell, MT
Sue Goldstein, NY Cynthia Kupper, WA Carolyn Randall, OH
Bette Hagman, WA Sandra Leonard, OH Ellen Switkes, CA
How can Celiacs in the U.S. get the necessary attention of the medical,
business and governmental communities we so desperately seek?
A few short years ago many European countries were experiencing the same
frustrations. Today, things are dramatically better. Most have
Gluten-Free products readily available; doctors are knowledgeably
looking for Celiac Disease in patients; school children are being tested
for CD when they first enroll in school; McDonald's sells Gluten-free
Big-Macs.
What made the difference was a series of serological screening studies.
They concluded, beyond a reasonable medical doubt, that 1 of every 300
in the general population is a Celiac. These tests showed that there
was a lucrative market in Celiac Disease; and money speaks.
Since CD is genetic, those of us in the U.S. of European descent should
test to the same ratio. This means that there could be more than a
half-million Celiacs in the United States.
The technology used by the Europeans to do these studies is even more
reliable today. Dr. Alessio Fasano and Dr. Karoly Horvath, University
of Maryland School of Medicine (UMSOM), conducted a small scale
serological study in the U.S. several months ago. This study showed
approximately the same results as those in Europe.
UMSOM has established the Center For Celiac Research, with Drs. Fasano
and Horvath, Medical Directors. They have set-up a design for a
comprehensive study, in cooperation with several medical centers
throughout the U.S., to establish the prevalence rate of CD in this
country. The main ingredient missing to implement this three (3) year,
$600,000 study is money. Grant monies from federal, state or local
governments are just not readily available, primarily due to the lack of
interest in a "rare" disease such as Celiac.
This is why we are putting forth this letter of support. Now is the
time to put our money and whatever other resources we may have on the
line. Now we can do something to make things better for ourselves, our
children and those Celiacs of the future.
We need your commitment to help fund this momentous undertaking. If
we pledge and contribute what we are able, we can make it happen. For
example: One-thousand (1000) of us contributing only $600 - $200 per
year, for three (3) years, will fund the study.
Saturday, May 10, 1997, 1:00 PM at the University Of Maryland - College
Park Campus, in the School Of Business Building, Room 1203, will be the
kick-off of this once-in-a-lifetime opportunity to make a real
difference. Some of our speakers will be Dr. Michael N. Marsh,
Manchester, England, Dr. Alessio Fasano, Dr. Karoly Horvath, and other
doctors prominent in the study and treatment of Celiac Disease. A
detailed program will be posted in about a week.
Whether you are able to attend or not, PLEASE SHOW YOUR COMMITMENT by
filling out the attached pledge form and return as indicated. We also
need for you to assist us in getting the word out to those who are not
on the Internet. Please copy and distribute this letter to members of
your local group.
As the new century nears, wouldn't it be great to be on the verge of a
new era of Celiac recognition and lifestyle that we helped to make
happen?
FOR RESERVATIONS; or more information contact:
Kirk Gardner Telephone 410-328-4400 Fax 410-328-6817
E-mail: [log in to unmask]
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I think it is important to definitively establish the incidence of
Celiac Disease in the United States.
NAME _______________________________________________________
ADDRESS ____________________________________________________
CITY ________________________________ ST _____ ZIP _________
I therefore pledge $____________ Total, to be payed in three equal
payments over the three years of the study; or,
Enclosed is my check for $____________ made payable to the UM
Foundation - Center For Celiac Research.
My employer has a matching charitable contribution program! YES ___
I understand my pledge or contribution will be used to support this
study at the Center For Celiac Research; University of Maryland School
of Medicine and that my contribution is tax deductible. These funds
are being managed by the UM Foundation.
Mail to: Center For Celiac Research
University Of Maryland School Of Medicine
29 S. Greene St. Rm. 120
Baltimore, MD 21201
Pledges may be faxed to: 410-328-6817
Pledges may be e-mailed to: [log in to unmask]
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