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2/3/2017

Marilyn’s Message February 2017

Celiac disease research is desperately underfunded. The primary reason that celiac disease research has historically been underfunded relative to other diseases with similar population prevalence and impact is the assumption that lifetime adherence to a strict, gluten-free diet effectively manages the disease. We know now that this assumption is definitely not true for many in our community… and may not…

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1/21/2017

Marilyn’s Message January 2017

Elaine Monarch founded Celiac Disease Foundation to give voice to the millions of celiac disease sufferers who were being systematically ignored by doctors, medical researchers, and our government.  A major part of our work over the last 30 years has been advocacy, including a successful campaign to secure gluten-free labeling regulations. Today, I am writing to…

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12/6/2016

Marilyn’s Message December 2016

2016 has been another milestone year for Celiac Disease Foundation. We began the year launching the revolutionary iCureCeliac® patient registry, the cornerstone of a systematic and cooperative approach between academia, private industry, and patient advocates to apply the principals of precision medicine to developing treatments and a cure for celiac disease. Over the course of…

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10/17/2016

Marilyn’s Message October 2016

This month, Celiac Disease Foundation launched the Pediatric and Adult Celiac Disease Follow-up Checklists. Based upon recommendations from the world’s leading medical experts, the Follow-Up Checklists specify best practices in post-diagnosis celiac disease management to assure optimal patient care.

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8/30/2016

Marilyn’s Message August 2016

If you are a parent, you know how challenging the entire back-to-school process can be. Now, imagine that your child has celiac disease or non-celiac wheat sensitivity (NCWS). Currently, parents are confronting the reality of sending their gluten-free children back to school, and I know from experience just how intimidating and frustrating it can be. Our first…

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7/29/2016

Marilyn’s Message July 2016

Last month, we shared the statistics from the first 1,200 participants in iCureCeliac®. Our first cut of analysis revealed interesting and, quite frankly, potentially alarming numbers about celiac disease, such as: 33 percent of iCureCeliac® participants reported that diagnosis took longer than five years from the onset of their first symptoms. 53 percent of iCureCeliac®…

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6/29/2016

Marilyn’s Message June 2016

Having a child diagnosed with a chronic autoimmune disease can be very scary. When Gabbi Saft was diagnosed with celiac disease, her parents, Warren and Amber, turned to the Celiac Disease Foundation (CDF) to begin researching the challenges that she would face. What they learned was that every time she had a school lunch, went…

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5/7/2016

Marilyn’s Message May 2016

Thank you to our more than 1,000 iCureCeliac participants for your amazing commitment to help researchers advance treatments and a cure for celiac disease and gluten sensitivity. I am pleased to share with you that we already have two research studies in place! The first is with Celimmune who is sponsoring clinical trials to test a drug…

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3/29/2016

Marilyn’s Message March 29, 2016

There is a growing understanding in the celiac disease community and among the medical professionals who treat the disease that the presence of celiac disease and its many symptoms can adversely impact a patient’s mental health. This can be particularly traumatic for young people. My son, for example, suffered from severe depression before he was…

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3/7/2016

Marilyn’s Message March 7, 2016

As part of our agenda to dramatically advance celiac disease research in 2016 and beyond, Celiac Disease Foundation has launched iCureCeliac, a massive patient registry database that promises to shorten the timeframe and lower the cost of developing life-enhancing treatments and a cure for celiac disease. The iCureCeliac database of patient-contributed and patient-controlled data will, for…

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