<<Disclaimer: Verify this information before applying it to your situation.>> National Celiac Groups Attend Advocacy Efforts in Washington DC The Gluten Intolerance Group (GIG), Celiac Disease Foundation (CDF), American Celiac Society (ACS), and Celiac Sprue Association/United States of America (CSA/USA) were formally represented. Celiac organizations and patients from several states recently attended two very important educational lobbying efforts in Washington DC. We were advocates for the Digestive Disease National Coalition (DDNC) and National Institute for Arthritis, Musculoskeletal and Skin Diseases (NIAMS).Our goals in lobbying were 2-fold. First to encourage the Senators and Representatives we visited to support a 16.5 % increase in the Budget for NIH (National Institutes of Health) and to provide $405 million to NIAMS in fiscal year 2001. This money is important to doubling the NIH budget by 2003. NIH is the major funding organization for research that is supported by government grants. Often research that may not seem directly linked to celiac disease and dermatitis herpetiformis, is beneficial to our disease and others. A good example is the Genome Project. Genetic mapping will help researchers refine their research and hopefully speed efforts to find causes and cures for diseases. The second goal was to increase awareness and educate about our particular disease. We accomplished this very well. On March19th celiac disease had the largest patient representative group at the DDNC a " nearly 20 representatives. Members of DDNC and NIH were very impressed by our representation of celiac disease. The following week we had 3 representatives attend the NIAMS Advocacy efforts. While visiting our Congress people, we had the opportunity to tell our stories and how legislative decisions impact us individually, as well as share some facts about CD/DH. These Fact Sheets and other materials were left with each congressional office we visited. DDNC represents many gastrointestinal disease organizations.We are pleased that all the national celia corganizations are members of this coalition. NIAMS and CPA-SDR (Coalition ofPatient Advocates for Skin Disease Research) are the coalition groups that the Gluten Intolerance Group (GIG) is a member of, in order to represent persons with dermatitis herpetiformis. Work through coalitions such as these is very important. These coalitions are strong forces with great influence in the medical areas they represent. What next: Patient advocacy work is important. However, you should also know that nonprofit groups (501c3) are severely limited, by law, in the amount of funding that can go toward advocacy work. So we need you! 1) Write to your Senators and Representatives about your disease and encourage them to support the NIH budget increase. Send them copies of the Fact Sheet. Visit them when they are at home (usually weekends and Mondays). 2) Join the national celiac organizations in representing a united, common voice. We are strongest when we speak as one. The more voices saying the same thing the better. Let your national group(s) know you want to participate in these activities. The Gluten Intolerance Group (GIG), Celiac Disease Foundation (CDF), AmericanCeliac Society (ACS), and Celiac Sprue Association/United States of America(CSA/USA) were formally represented. DDNC and NIAMS groups are often invited to participate in advocacy workthroughout the year. 3) Plan to come to Washington DC next year. Often Congress peopleare very busy and sometimes selective in whom they see. They want to hear from theirconstituents. An example was a Senatorfrom California who wanted to seeconstituents from her district. If there had not been a representative fromCalifornia on a team, that senator would not have heard about Celiac Disease. 4) We need representatives from as many states as possible.Although, our lobbying efforts are at the mercy of the Congressa (TM) schedule,these events often take place in March or April. 5) Offer to testify. Testifying before Budget and HealthCommittees is by written invitation only. First we must write letters askingpermission to testify and then wait to be approved. It is a wonderfulexperience to express our storyin this manner. Children and people severely affected by the disease are themost influential. This summary was written as a joint effort of all the national celiac organizations: GIG, CDF, CSA/USA, and ACS. Submitted by: Nancy Seattle, WA USA