<<Disclaimer: Verify this information before applying it to your situation.>> REPORT FROM THE CSA CONFERENCE, OCTOBER 1998 By Janet Y. Rinehart, Past President, CSA/USA, Inc. I imagine you celiacs are wondering about the recent CSA conference. I went to the CSA annual conference in Warwick, RI because I, as President of CSA, needed to preside at the Governing Board meetings and I wanted to learn even more about i Celiac Disease and Dermatitis Herpetiformis, gluten-free products and baking tips. Also, I eagerly wanted to renew acquaintances with the celiacs I have met over the 11 years I have been attending CSA conferences. Yes, I had a very good time. In honor of CSA=92s 20th birthday, I was proud to announce, on behalf of Region 3 Director Rosalie Jalbert, former Region Director Joanne Hameister and myself, the surprise presentation of a special PROCLAMATION from the Governor of Rhode Island. Let me summarize highlights of actions of the Governing Board. Regarding the generic new member packet, the chairman Diane Paley reported that the final draft was submitted to the Publications Committee and we were awaiting corrections very soon. Copies were passed out to the Governing Board and observers. The Board voted to first print the text in Connections, the special publication for CSA leaders. The generic new member packet can be tailored to chapters and resource units, with pages for local information as to restaurants, health food stores, local products, etc. Also, a new tri-fold brochure has been developed where blank sections can be filled in by the local group to show local contacts, physician advisors, meeting times and place, etc. I am grateful at the dedication and commitment of the Thrust (Education) Committee to see this project to fruition. The Board voted to reinvestigate products and publish a new Cooperative Gluten-Free Commercial Products Listing. We ask individuals and chapters to cooperate by sending to the CSA office copies of new letters from food manufacturers. Any new folks interested in helping with this project, please contact new President Ruth Smith. I reluctantly asked that the Celiac Disease/Diabetes project be withdrawn from CSA back into the Houston chapter where it originated because of frustration with the totally negative response from the medical advisors to the proposed questionnaire and no forthcoming suggestions or direction. A report will be submitted from the committee along with resignations from the committee members. (The committee work will continue in the Houston chapter and cooperate with other groups/individuals.) A committee will be organized to look into the current and future governing structure of CSA. The Committee to Develop a Job Description for Executive Director gave a written draft report. Leon also submitted a report; the work of the committee will continue at Ruth=92s direction. During discussions about finances, we were glad to learn that a line item for financial consulting services was added to the new budget for financial consulting services monthly and at the end of the fiscal year. Regarding the Constitution/Bylaws, a section was revised (Article III, Membership, Section 6. Expulsion and Removal) in order not to deny anyone health information from CSA. Also, a new section was added to deal with nonperformance of a leader=92s duties. Both sections were approved at the Business Meeting. The newly-elected officers are as follows: President-Elect: Mary Schluckebier of Omaha NE; Past President: Janet Rinehart of Houston, TX; Recording Secretary: Ann Dodds-Frerichs of Boston, MA; Treasurer/Comptroller: Marge Campbell of Omaha, NE; Region 2 Director: Dean Cling of Kansas City, MO; Region 2 Member-at-Large: Latisha Mae Thomas, Leavenworth, KS; Region 4 Director: Daphne Ledford, Charlotte, NC; Region 4 Member-at-Large: Glenda Keyes, West Columbia, SC; Region 6 Director: Donna Beatty Loveland, CO; Region 6 Member-at-Large: Margaret Eldorado, Tucson, AZ; Membership Chairman: Carol Clarke, Blythewood, SC. Future sites of the annual conference were decided: 1999: Atlanta; 2000: Albuquerque; 2001: Minneapolis; 2002: Omaha. Personally speaking... When I was diagnosed, there were only two speciality food companies catering to celiacs: Ener-G Foods and Dietary Specialties. I felt quite fortunate then. However, now the number of vendors offering gluten-free food has swelled to around 50. Eleven years ago I managed to cook delicious recipes with Marion Wood=92s three cookbooks. Over the years Bette Hagman, Carol Fenster, the Gluten-Free Baker Sandra Leonard, and a number of others have have added to the quality and variety of gluten-free cooking possibilities. I could not do without CSA=92s Lifeline and Handbook, Jax Lowell=92s Against the Grain, the new Sully=92s Living Without magazine, Ann Whelan=92s Gluten-Free Living, the Celiac List on the Internet, Stoke=92s Pharmacy=92s Guide Through the Medicine Cabinet, and the many chapter newsletters we diligently publish. Also, I was invited to write my personal story in a new book showing the many faces of CD, Coping with Celiac, The Great Masquerader, edited by Aileen Bennett. You really don=92t know how fortunate we all are to have all these resources available now. I personally thank our food vendors, resource/cookbook writers, leaders, knowledgeable medical community, and other supporters for helping us to cope with the world of celiac disease. I have enjoyed my two-year tenure at President of CSA. I have tried to facilitate some of the ideas that celiacs have told me they need. When I changed computers this month, I noticed I had answered over 1000 E-mails, mostly from celiacs. Fortunately, I do like to write letters. I believe personal contact is the most satisfying way to help other people, on both sides. It is very gratifying to hear hope in a person=92s voice at the end of an orientation session when the person called in despair or confusion. I thank you for the opportunity to serve you. Please give your support to our new president, Ruth Smith of Chicago. GUBERNATORIAL PROCLAMATION WHEREAS, Celiac Disease and its related syndrome, Dermatitis Herpetiformis, are inherited autoimmune digestive disorders in which the ingestion of gluten from wheat, barley, rye and oats damages the absorptive surface of the small intestine; and, WHEREAS, The only treatment for celiac Disease and Dermatitis Herpetiformis is a gluten-free diet; and, WHEREAS, Celiac Disease is under-diagnosed in the general population and members of the celiac community support research to determine the extent of the disease, which might be as low as one in 350; and, WHEREAS, Members of the Celiac community, individually and through local chapters, provide current information to individuals about the nature of the disease, the gluten-free dit and vendors of gluten-free foods, and encourage partnerships with medical professionals and dietitians who are responsible for diagnosing Celiac Disease and Dermatitis Herpetiformis; and, WHEREAS, Celiac Sprue Association (Csa/USA) is a non-profit organization dedicated to assisting people with Celiac Disease and Dermatitis Herpetiformis and families with a member who has Celiac Disease; and WHEREAS, The Governor of the State of Rhode Island acknowledges the annual conference of Celiac Sprue Association/USA, Inc. at the Crowne Plaza at the Crossings in Warwick, Rhode Island on October 30, 31 and November 1; NOW THEREFORE, I, LINCOLN ALMOND, GOVERNOR OF THE STATE OF RHODE ISLAND AND PROVIDENCE PLANTATIONS, DO HEREBY PROCLAIM October 30, 1998 as Celiac Disease Awareness Day in Rhode Island and encourage all of its citizens to join me in welcoming its annual conference to the state. Janet in Houston Celiacs Helping Celiacs [log in to unmask]