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History of the Association of Celiacs from Entre Ríos

(*) The Association of Celiacs from Entre Ríos was founded around 15 years ago by a group of mothers who, upon their children’s diagnosis and given the lack of information, specially of food necessary to follow the treatment, decided to gather and invite other mothers to join them. The organizational aspect was not a priority, it was a framework for mutual assistance with the strong sense of feeling a socially invisible minority. From a residents’ association, they tried to create recipes and then share, taste and improve them with what little they counted on and what much they had: Will and Love. One of the pioneers is Laura Nieres, who has given the first steps into the topic, and to whom we accompany in the task we were called for.

In 2007, the need of appointing new members for the board of directors resulted in a review of objectives and actions that generated a profound and evolving change.

We decided to stop speaking only to celiacs and start to communicate with society and companies.  We stopped perceiving that the actions were of assistance (giving boxes of gluten-free food which came from the National Government) to turn them into comprehensive actions in which all of the aspects of the pathology were covered and,  furthermore, in which people  enjoyed their constitutional rights to Health and Food without losing their dignity. It seemed to be an elusive utopia …

ACER is composed of celiacs’ parents and adult celiacs with the conviction of understanding that solidarity and joint work will offer the fruits of a life with physical and emotional health, without restrictions which become social barriers.

Each member of the association has their personal background which justifies commitment, disinterested care or, better said, with the enormous interest of altering a destiny … behind a problem there is an opportunity. Twelve years ago, these things belonged to a quite unknown and exclusive world, I would say excluding and also discriminating world, but, little by little, we broke down barriers. One of the barriers was ignorance.

You can approach the Celiac disease from its various needs, and people (we) who were going through common circumstances joined our forces, knowledge, experiences and sense of belonging to re-found ACER.

We knew that it was required to introduce the topic in a comprehensive way in order to support and implement actions which were far beyond the sporadic, eventual and individual care. So we started to work on a Provincial Law, its regulation and implementation. It was not easy but the result is a law with greater benefits than the one set forth by the Government,  in relation to the Health Care coverage, for instance, or the Provincial Program with an Advisory Council composed of participating actors (society, university, government agencies, health, food safety authorities, among others). Also, granting tax exemptions to Companies processing gluten- free food, among others.

From the association, we decided to meet each of the basic needs which form part of the life of an individual who suffers from this disease, with the only stable and tangible resource: the human being. From that moment, we have worked on legal regulation, diffusion, education, awareness raising, support to celiacs and their family, interdisciplinary work, raising-awareness sessions, training sessions on the topic to companies, medical seminars, gastronomic workshops for celiacs, request for care to emergency situations, as well as we support entrepreneurs to develop products for celiacs, most of whom are already big companies.

At organizational level, we accompany the companies to develop corporate social responsibility practices, either for internal staff or society. This could be done, we provided a valuable and practical piece of information, the “First Manual of manipulating food for celiacs intended for Gastronomic Establishments”, together with the National and Provincial Ministries of Tourism. With an idea, strength, plus “Gluten-free Food, Suitable for Celiacs, Healthy for everybody”.

From ACER, we want that “everybody who suffers from this disease enjoys life without social differences, in which legal regulations and companies become strategic partners for a better life quality”.

This history was told by its current female president who continuously strives to develop her association and the activities performed there.

Thank you, Cecilia Pautasso, for describing the origins, actions and projects of the Association of Celiacs from Entre Ríos.

 

(*) Translated by Lucila Agustina Norry, from Buenos Aires, Argentina

 

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