Chapter 1: Getting Started

Did you ever wake up one morning and think, I am going to change my life. I want it to be more meaningful?   Well, that happened to me in 2003. And, I began my journey.

Let me rewind a minute.  My mother died from pancreatic cancer when I was 20 years old. My father died 20 years later from lung cancer.  My thought? No time like the present time, quit your job and do what you love doing.

At the time, I ran the support group for celiac disease out of Abington, PA, and that’s what I loved. Starting a non-profit with a celiac focus seemed like a perfect fit, but I had no clue how to do it. So, I went back to school and started taking night classes in non-profit administration.

While in school, I got the bright idea to team up with a partner and apply for a grant from the National Institutes of Health (NIH). So, I rolled up my sleeves and slaved away! Funnily enough, I was taking a grant writing course as I was submitting the NIH proposal. One day, the instructor in my grant writing course asked if anyone in the class had experience writing grants.  I raised my hand and politely said, “Yes.” When I informed him that it was an NIH grant, he asked if I would teach the class. I was totally perplexed and replied that it was the first grant I had ever written. He was shocked!

Later on, the instructor told me that he thought there was no chance for funding. The moral of this story: take criticism in stride. If I had any inkling of how difficult it was to receive NIH funding, I would have never tried. Nothing takes the place of passion, persistence and finding people who have “been there, done that” and are willing to help.

Following the grant application, I put together all the documentation to start NFCA. I had a ton of paperwork to fill out and needed to make a lot of decisions very quickly.  A person on a mission is hard to stop, so I just hung in. I next recruited a board of directors, a business advisory board and a medical advisory board.

I set my office up on the third floor of my house, in our guest room. My dear husband built our website, www.CeliacCentral.org.  (It was another URL at the time, but that is another story.)

And so it began! Next, it was time to get this cause some attention. But I’ll save that for Chapter 2…

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