Today, I had the pleasure of speaking with Alice Bast, the Executive Director and Founder of the National Foundation for Celiac Awareness (NFCA). Alice founded the NFCA in 2003 after suffering for many years with undiagnosed Celiac Disease. She went through 22 doctors, the trauma of delivering a stillbirth, multiple miscarriages and a baby born at only 3 pounds. These years were also marked by debilitating physical symptoms and almost unbearable mental and emotional strain. See more about her personal story here. After her CD diagnosis, Alice became co-chair of the Greater Philadelphia Area Celiac Support Group which now serves over 750 members. She became involved in the community and in supporting others with Celiac but eventually wanted to do more.
With existing Celiac or Gluten Intolerance groups focused more on support, Alice launched the NFCA with the idea of focusing on raising awareness, improving diagnosis and becoming a change agent for CD sufferers. With her business background, she had hopes of working with corporations (non-profit and for-profit) in the hopes of increasing the products available to those on a Gluten Free Diet. An example of this is her collaboration with Anheuser-Busch on the creation of their Gluten Free Beer Redbridge - the first and only with distribution to all 50 states. Alice and the NFCA were instrumental in getting this product to market.
Alice is passionate about the fact that better awareness will feed better research... better research will in turn increase the number of companies who cater to Celiacs... the more companies that cater to us, the more competition... all of which leads to lower prices, more choices and an easier Gluten Free life. This pretty much sums up the mission of the NFCA.
Here are some interesting items mentioned during my time talking with Alice.
- Alice's wish is that scientific researchers do Celiac research because CD is an interesting/intriguing genetic disease to study.
- The NFCA has distributed over 800,000 Celiac brochures to date with the assistance of their grocery and diagnostic partners.
- Alice and the NFCA are currently working with Wal-mart on their Gluten Free product selection. Introducing Wal-mart into the fold will certainly help bring down prices. Judging by my last poll question in which the majority of respondents said they spend $200 or more per month just on GF grocery items, this is great news.
- Alice will be presenting at the 13th Annual International Celiac Disease Symposium on April 6th in Amsterdam. The presentation will include the NFCA's approach to physician training and changing physician behavior around Celiac Disease diagnosis.
- Alice envisions a country where there are Celiac research centers in every major city around the US, not just at Columbia, Maryland and U. Chicago. With Duke, UNC and NCSU so close, there is definitely no reason why Raleigh-Durham can't have one!
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