In the blink of a celiac click

Add $45 million to the lengthening list of big numbers associated with celiac disease. That’s the amount the family of a grateful patient from Indiana is donating to the University of Maryland Center for Celiac Research for the study of celiac disease and other autoimmune disorders such as multiple sclerosis and Type 1 diabetes. Alessio Fasano, MD, professor and director of the Center for Celiac Research, will be the first director of the new research enterprise.

I am astounded by the amount of the donation but not that this family has chosen Dr. Fasano to be the recipient of their generosity. He certainly deserves it.

I met Dr. Fasano nearly 20 years ago at a medical meeting shortly after I had been diagnosed with celiac disease. He was new to this country and not as fluent in English as he wanted or needed to be. His language frustration was palpable, but it didn’t last for long. While plenty of funny constructions still seep into his heavily accented English, language is absolutely no barrier in his life.

I like to say that Dr. Fasano landed on US soil, held up a celiac disease flag, and has not put it down since them. There has been success after success and we have him to thank for many of them. But it seems he’s just getting started. He is indefatigable, brilliant and an awful lot of fun to be around. My favorite Alessio slip was this comment referring to the speed with which one gets answers on the web: “It happened in the blink of a click,”

It’s easy to get lost in the challenges of leading a gluten-free life and to forget the damage autoimmune disease brings to the human race. Dr. Fasano once said, “If I had to have to have an autoimmune disease, I would want it to be celiac disease.” I couldn’t agree more. Diabetes, for example, is one of the leading causes of illness and death not only in this country but around the world. It is a constant hassle and those who cope with diabetes cannot let their guard down for one minute. I actually take some pride in thinking that study of “my” disease might bring some help to those who are challenged with diabetes.

Multiple sclerosis patients deal with many physical challenges and often with a shortened life. This simple explanation from the Mayo Clinic says it all:

“Multiple sclerosis (MS) is a potentially debilitating disease in which your body’s immune system eats away at the protective sheath that covers your nerves. This interferes with the communication between your brain and the rest of your body. Ultimately, this may result in deterioration of the nerves themselves, a process that’s not reversible.”

I grew up in the 50s and was one of the original ardent fans of the Mickey Mouse Club. Annette Funicello was perhaps the most outstanding of the Mousekateers on the show and went on to star in several teen-oriented flicks. She was the one who usually got the guy, who was usually played by Frankie Avalon, one of my teen heartthrobs. To say I was jealous would be an understatement.

Funicello was diagnosed with multiple sclerosis in her forties. One of the sadder aspects of MS is that it tends to strike when people are relatively young. I’ve seen her on television where she sometimes appears as MS spokesperson and, like Michael J. Fox does with Parkinson’s Disease, she does not hide her symptoms. That takes courage.

My point is that other autoimmune disease, like diabetes and MS, seem to have a much more profound effect on our ability to live a happy, healthy life than does celiac disease. It might even be safe to say that CD might not receive the research attention it does now were it not for these connections.

But all this is not meant to debate which is the worst autoimmune disease on the planet. It would be great to get rid of all of them. The $45 million that the Center for Celiac Research will receive will be put to good, targeted use and those of us with celiac disease will likely be prime beneficiaries. Please join me in congratulating Dr. Fasano and in hoping this money gives him to opportunity to do great things for this planet. And, of course, it wouldn’t hurt if your congratulations come attached to a monetary donation to the CFCR Here is a link to the website In the blink of a click, you can contribute to what is certainly a noble effort.

Ann