WHAT IS NFCA?
The National Foundation for Celiac Awareness (NFCA) is a national 501(c)(3) non-profit organization that advances widespread understanding of celiac disease as a serious genetic autoimmune condition and works to secure early diagnosis and effective management. We empower our community to live life to the fullest, and serve as a leading and trusted resource that inspires hope, accelerates innovation and forges pathways to a cure.
A LITTLE HISTORY
President & CEO
National Foundation for Celiac Awareness
Watch a video about Alice Bast and her work at NFCA »
By the time Alice Bast discovered she had celiac disease, she had suffered through 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.
She had been told by 22 physicians that she “looked fine” -- with some actually suggesting she consult a psychiatrist. One fateful day, a helpful friend suggested she might have a food allergy.
Influenced by her friend’s suggestion, Bast consulted her 23rd physician, who finally diagnosed her as having a “rare” autoimmune disease called celiac sprue. Upon further research, she learned that undiagnosed and untreated celiac disease can lead to a host of other autoimmune diseases and can cause problems with fertility, repeated spontaneous abortions, amenorrhea and “intrauterine growth retardation.” Bast also discovered that there is no known cure for celiac disease, and that research toward a cure was grossly under-funded by federal agencies and pharmaceutical companies. Without a medical and drug therapy treatment, the only way for Bast to manage her condition was to adhere to a strict and rather complicated gluten-free diet.
Her desire to spare other families from needless heartache and suffering compelled her to establish the National Foundation for Celiac Awareness (NFCA) in 2003. Under Bast’s direction, the fledgling foundation quickly spread its wings, participating in the first-ever National Institutes of Health (NIH)’s Consensus Development Conference on Celiac Disease.
Soon, Bast was invited to join an ad hoc committee formed by the NIH to increase awareness of celiac disease among the medical community. Alice provided comments on an NIH celiac disease fact sheet and played a large role in the development of additional materials to better inform physicians, dieticians and the general healthcare community about celiac. Bast was also principal investigator on an NIH-awarded grant to educate the public and the healthcare community about celiac disease through multi-media strategies. Under her direction, the NFCA pursue its mission to raise awareness of celiac disease and non-celiac gluten sensitivity ('gluten sensitivity') that will facilitate research, education and early diagnosis, and improve the quality of health of children and adults affected by this autoimmune disease.
Testifying twice in front of the U. S. Food and Drug Administration, Bast has fought for national standards in labeling foods as gluten-free to keep food safe for consumption by the celiac disease community. The initial phase of the Food Allergen Labeling and Consumer Protection Act has gone into effect. Bast and NFCA look forward to the second step with gluten being identified in food labeling. As of August 2014, the FDA's gluten-free labeling rule officially took effect.
2006 was a milestone year for the NFCA with the launch of a national public awareness campaign, positioning the NFCA as one of the nation’s best resources for information for diagnosed and undiagnosed celiacs, their loved ones and their healthcare providers. This campaign continues in an expanded form today with a renewed focus on education of physicians, nurses, dietitians, pharmacists, and the pharmaceutical industry. Through the GREAT program, Bast and the NFCA organization will be training chefs and restaurant staffs, the food industry and other commercial food providers in the preparation of gluten-free food.
On a daily basis, Bast shares her passion and her expertise with medical researchers, healthcare companies and federal agencies in an effort to achieve the NFCA’s goals of increased public awareness and, reduce the time to diagnosis of celiac disease.
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