Marilyn’s Message September 2014

Do the Math – 83% of Kids With Celiac Disease Undiagnosed and Suffering

One year ago, Celiac Disease Foundation introduced our School Nurse Awareness Plan (SNAP!) Back-to-School outreach campaign.  Since then, with your generous support, our Chapters have educated more than 2,000 school nurses and health aides throughout the country in the diagnosis and treatment of celiac disease and gluten sensitivity. This fall, we are extending our Back-to-School campaign, at your request, to include outreach to physician offices. Through our Community Engagement Survey, you asked that CDF create a program to allow you to directly participate in educating our school health workers and our medical community about celiac disease.  You’ve Asked. We’ve Answered.  CDF now proudly presents the 2014 Back-to-School Advocacy Campaign where with your generous donation, CDF is able to provide materials to school and physician offices to educate both healthcare workers and patients to “Consider Celiac.”  You may also order or print the same Patient Info Cards and Posters for your school health or physician’s office, and help thousands of children and their parents get the help they need to reach a timely diagnosis.  A bonus is that your tax-deductible gift for these cards and posters allows CDF to distribute an equal number of cards and posters to areas of critical need.

Continuing with our advocacy efforts, the CDF Medical Advisory Board, together with the National Board of Directors submitted a letter to the U.S. Preventive Services Task Force (USPSTF) regarding its draft research plan for screening for celiac disease.  The letter supports the comments submitted by the North American Society for the Study of Celiac Disease (NASSSCD) and encourages the USPSTF to focus on high risk individuals (those who are symptomatic, have associated diseases or a family history) in their research.  You may read the entire text of the letter here.

I became involved with CDF because my son and his father went many long years without a diagnosis, developing multiple other autoimmune disorders and suffering needlessly due to the unnecessary delay.  Daily, I hear your similar stories. I am convinced that together we can change this inexcusable pattern by empowering our community to demand both timely diagnosis and respect for our disease.

I look forward to hearing your advocacy stories.  Please share them with me at marilyn.geller@celiac.org and @ceoatcdf.

To Your Health,

Marilyn G. Geller, Chief Executive Officer