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Friends,


I am writing to let you know about a new resource for people with celiac
disease in the Midwest, called the University of Chicago Celiac Disease
Program (UCCDP). Created earlier this year, the UCCDP has made great
strides in just six months, illustrating the important needs that exist
in the Midwest.


The University of Chicago Celiac Disease Program (UCCDP) was established
to develop and coordinate patient services, research activities, medical
education and public awareness initiatives in order to increase the rate
of celiac diagnoses and improve the lives of patients in the Midwest.
Our efforts are focused on the Chicago area, but every UCCDP program is
created with the intention of making it "portable" so that other medical
centers can implement similar programs with proven results.


Created by Stefano Guandalini, M.D., an international expert on celiac
disease, and Robin Steans, mother of a child with celiac disease, the
UCCDP is a unique partnership between a dynamic external advisory board
and a premier academic medical center.  This endeavor is enhanced through
a close working relationship with the Celiac Sprue Association of Greater
Chicago and the Friends of Celiac Disease Research in Milwaukee,
Wisconsin.


Since February, the UCCDP has launched activities in four program
areas:


Patient Services: Helping people who are at-risk for celiac disease to
learn how they can be tested, and providing information and support to
newly diagnosed patients and their families.

Professional Education: Expanding the knowledge base of physicians and
dietitians who come in contact with at-risk patients so that they can
identify people in need of testing and provide appropriate nutritional
counseling to newly diagnosed patients.

Research: Contributing to the body of scientific knowledge on celiac
disease, focusing especially on key unanswered questions regarding the
prevalence of celiac disease in the U.S. and in special at-risk populations.

Advocacy and Awareness: Heighten the awareness of the general public,
most importantly on the symptoms of celiac disease so that persons found
to be at risk may be tested, and advocate for better food labeling,
increased research funding and improved public accommodation for people
with celiac disease and their families.


Our Accomplishments:

o Developed a patient care package program that provides concrete tools
like a listing of gluten-free foods, a grocery store guide, newsletters,
and memberships to local and national celiac organizations, as well as
donations of gluten-free foods for children newly diagnosed with celiac
disease and their families.  Parents who have received the care packages
have said that they feel less overwhelmed about learning the gluten-free
diet, and less afraid about what to feed their children. Families receive
the care package at the time of diagnosis.


o Designed a clinical protocol to educate primary care physicians about
celiac disease through an educational intervention and a year-long study
that helps to identify current patients at risk for celiac disease in
their practices. The protocol is being finalized and the program will
begin to recruit participants shortly.


o Planned and implemented an educational event for parents, featuring
noted author Danna Korn, speaking on celiac disease and the challenges of
raising a child with the condition.  During the parents' presentation,
children were kept busy nearby at a gluten-free carnival.  Over 175
people were in attendance, and participants expressed great relief in
finding other parents to talk with who were experiencing their same
anxieties and fears.


o Featured in a Sunday Chicago Tribune health article on celiac disease,
where the UCCDP's telephone number was listed as a resource for readers.
Over 125 calls were generated, which led to 6 people getting tested (that
we can confirm) and at least one woman, to date, receiving a diagnosis of
celiac disease as a result of the article.


o Created a dedicated celiac disease clinic at the University of Chicago
Children's Hospital, staffed with professionals who are dedicated to the
diagnosis and treatment of celiac disease.


We are so grateful for the support we've received from organizations,
companies and individuals serving the celiac community and look forward
to keeping you updated on our progress and upcoming activities.


Best Wishes,


Michelle

Michelle Melin-Rogovin, Program Director
The University of Chicago Celiac Disease Program
at The University of Chicago Children's Hospital
5839 S. Maryland Avenue, MC 4065
Chicago, Illinois 60637
Phone: 773-702-7593
Fax: 773-702-0666