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Volunteer Trio Becomes E-mail Expert


These women are great!

This month, the National Foundation for Celiac Awareness (NFCA) is pleased to honor three volunteers as the Awareness Advocates of the Month. Karen Ament, Susi Forst and Connie Maltin have worked as a dynamic team as they reach out to help others.

If you have ever sent a message to the National Foundation for Celiac Awareness (NFCA) via the info@beyondceliac.org mailbox, you have “met” these wonderful volunteers.  Karen, Susi and Connie work together to gain answers to every question that comes to NFCA. In fact, they have become experts at e-mail correspondence on all subjects related to celiac disease and the gluten-free diet.  For some requests, this trio engages our fabulous Help Line volunteers to pitch in with answers. At other times they answer the writer directly. No matter what, they work to insure that the job gets done!

School may be over for Karen, Susi and Connie, but studying is not!  A big part of this volunteer work involves researching answers to questions that are a bit more involved. Some take our volunteers on interesting journeys. For example, Connie and Karen have answered questions from around the globe, including a request for a list of restaurants in Spain for celiac travelers.  

Karen finds it reassuring to know that others around the world are working to improve the quality of life for those with celiac disease.  She was the first member of this info@beyondceliac.org team. With a background in social work, Karen has a history of helping others and assisting them to learn how to gain even more information on their own.

Karen has two small children with celiac disease. Her older child started to have symptoms at 8 months, stopped growing at 3 years, and finally was diagnosed at age 5. She has grown an astonishing 2 ½ inches since going gluten-free! Her younger child was tested immediately as a member of a family with celiac. As a result, she never suffered with any symptoms.  

Susi Forst enjoys this volunteer position because it gives her a chance to give back in honor of the many people who helped her along the way.  Susi has seen a marked improvement in the rate of diagnosis through her experience with testing for her two children with celiac disease. It took six long years for Susi to gain a correct diagnosis.  Her older son was diagnosed within two years of having symptoms and her younger son was diagnosed right away.

Susi believes that this is a good time to be diagnosed with celiac disease because “things are getting better.” More doctors know about celiac, there are centers and support groups to assist the newly diagnosed patient, and there are better products for gluten-free living. Susi congratulates NFCA on doing a great job of helping celiacs feel a part of a community that will support them as they regain their health and maintain a gluten-free lifestyle. Susi and her teammates are a huge part of that process!
Connie has been diagnosed with celiac disease for over ten years and is very much in the groove of the gluten-free lifestyle.  It was not always that way! She, too, has seen a huge change for the better in the gluten-free world. The range of products and the help available to the newly diagnosed celiac is far greater now than ten years ago when no special food was available.  Connie remembers literally living on rice cakes. Her daughter Vanessa, diagnosed with celiac disease a few years ago, has authored a book called Beyond Rice Cakes giving young people the tools that were not available to Connie and her “celiac generation”.  (Yes, this is NFCA staff member Vanessa Maltin!)

Connie’s interest in healthy living for celiacs includes a concern over labeling of the inert materials in the drugs we take. She looks forward to the day when this level of labeling will be mandatory for all medications.

All members of this NFCA Team agree that getting accurate information out to the public is vital and their most important task. And, they have a wish list.  

•    Karen is eager for celiacs to continue to join forces to gain power in the marketplace.
•    Susi looks forward to the day when gluten-free food will become a standard menu entry in restaurants across the country.
•    Connie believes that the road to good health is having a healthy diet. Her wish is that everyone be educated in how the food we eat affects each of us. For Connie, a healthy diet is far better than a pill.

We all are indebted to Karen, Susi and Connie for their dedication, knowledge and willingness to share. This team demonstrates what advocacy is all about!