Marilyn’s Message May 2018

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In honor of Celiac Disease Awareness Month. I share my National Conference Welcome remarks:

I have been the Celiac Disease Foundation for six years now. I have to say, it’s been quite a journey.

I was gifted this position by Elaine Monarch, our visionary Founder. Thanks in large part to her efforts, celiac disease began to emerge from the dark shadows of American health care. Elaine was the “go to” source for everything celiac, especially in Southern California, for patients and healthcare providers alike. Indeed, I first became aware of the Foundation when my son Henry and I came to Elaine with questions, once he was finally diagnosed with celiac disease after more than a decade of suffering.

As our understanding of the disease and it’s far-reaching implications has evolved over the years, the mission of the Foundation has evolved. The biggest change is this: we are no longer primarily a patient support organization. We are now a national patient advocacy group.

And what we advocate for, what we fight for, what we work for, above everything else, is to improve disease diagnosis, and to bring to patients FDA-approved treatments and a cure for celiac disease. Towards those goals, the Foundation now funds research at major academic medical centers like Stanford, USC, UCLA, Columbia, Harvard, University of Chicago and Children’s National Health System.

Two and a half years ago, we launched iCureCeliac, the nation’s only and, by far, largest public patient registry for celiac disease. iCureCeliac is completely changing the economics of celiac drug research. Thanks to the generous support of our donors and the selflessness of the celiac community in the shared desire for treatments and a cure, we have passed 5000 registrants! We aren’t done. Biopharma researchers say we need to double the size of the registry to make it even more impactful. We hear them. And we will.

We launched our Clinical Trial Finder and I am delighted to say that we are becoming one of the leaders in finding the right patients for critical, FDA-mandated clinical drug trials.
We have expanded our presence in Washington DC, giving voice to the celiac community in federal research and regulatory forums where so many important decisions are made. I also want to note that celiac.org is on track for more than 7 million unique visitors this year who come to use our Symptoms Checklist (a new, interactive Symptoms Assessment Tool will launch soon thanks to a generous gift), learn the latest celiac research, join iCureCeliac, get meal plans and recipes, and more. This is more than 10 times the audience of just six years ago.

We have momentum. We are getting closer to treatments and a cure. More and more, leaders in biopharma, in academic research, in government, understand that celiac disease is a serious autoimmune disease and warrants attention.

The Foundation is at the forefront of this charge because we have two incredible assets. First is our staff, volunteer board members and medical advisors, and our boots-on-the-ground volunteers, Patient Advocates, Team Gluten-Free members, Student Ambassadors, event volunteers, and so many others. I cannot thank them enough for their dedication, insight, skill, and passion. Second is you. Our donors fund our work. They fund our investments in research, including iCureCeliac. They fund the online diagnostic tools. They fund our advocacy work.

If you are a donor, I thank you. And, if you are not a donor… YET… come talk to me – call me, email me. We need your support.

To Our Health,

Marilyn G. Geller
marilyn.geller@celiac.org
818.716.1513, x102

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