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Posts Tagged ‘celiac disease program’

If you’re like me, at this time of year, every day in the mail you receive a request for a donation. They run the gamut, in our case, from the local food bank to environmental causes to our tiny local library. As well, every year we receive requests from a couple of celiac disease organizations and programs.

This year I have already chosen to donate to my favored program, the University of Chicago Celiac Disease Program, through our annual United Way campaign at work. And yes, there are other programs out there but the UCCDC is close to my heart. You see, I was a support group leader in Chicago at the time the program began in 2001. Our group helped to support Dr. Guandalini in whatever way we could. One of our support group board members helped hire Dr. Guandalini’s first Program Director and I can remember when the Program Director’s office was basically a large closet. Eventually I sat on the board and helped out wherever needed, such as co-writing and producing the quarterly newsletter for the program. As well, the Center assisted our support group in whatever way they could.

I also believe in the people involved in the program and the work that they are doing. Dr. Stefano Guandalini was born, raised and educated in Italy, which many of us believe to be a hot-bed of celiac disease awareness and knowledge. His specialty is pediatric diarrheal diseases with a particular emphasis on celiac disease. As founder of the program he works to increase awareness and improve the lives of all of us impacted with celiac disease. He is also a lovely and kind man.

Another of the staff, Dr. Bana Jabri, whom I only met once during my tenure with the program, is a leading researcher in celiac disease. The one time I met her at a board meeting, soon after she became involved with the center, she was explaining the mouse model research that she wished to complete. And that work is underway…thanks to donors such as ourselves. The mouse model will recreate celiac disease in a mouse so that researchers can work to develop vaccines and/or a cure.

In the recent mailing I received from the center, it states:

“we believe we can find a cure for celiac disease in the coming 10-15 years”

Wow. How exciting is that? Wanna know how you can help? Yes, I know you are but one person and may only be able to commit a few dollars to the cause this year, but every little bit counts. I know this for a fact, from working behind the scenes in such an organization. Yes, the big money from wealthy donors is amazing, but the little money counts just as much. Our money is worth just as much as theirs! And if you can’t afford to send a monetary donation this year, do you live near one of the centers? Can you afford some time to assist them with whatever they need? (I know they need it, no matter how much money they have.)

So, be sure to check out the UCCDC website and see if what they are doing speaks to you. There is a lot of great information for the celiac patient on the site. In fact, every year I print out their “Post Diagnosis Follow-Up” sheet and take it to my primary care doctor to get my annual blood work completed.

And know too, that this center, as well as all the others, are there for us, whether you are trying to get diagnosed or need follow-up assistance. Call them if you have a question or need some information for you or your doctor – or a friend – anyone, really. That is what they are there for! The UCCDC has an information hotline that you can call at 773-702-7593.

I know times are tough and gift-giving is down but please consider one of these organizations as a recipient of how ever much you can give. It benefits us all.

Other programs for you to consider:

Celiac Disease Center at Columbia University (Dr. Peter Green)

The University of Maryland Center for Celiac Research (Dr. Alessio Fasano, a former student of Dr. Guandalini’s)

Celiac Disease Center at Beth Israel Deaconess Medical Center

Wm. K. Warren Medical Research Center for Celiac Disease at University of California at San Diego

The Children’s Hospital of Philadelphia Center for Celiac Disease

National Foundation for Celiac Awareness (NFCA) – advocacy

Please let me know if I have missed any!

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