Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!
  • Record is Archived

    This article is now archived and is closed to further replies.

    Scott Adams
    Scott Adams

    National Celiac Groups Attend Advocacy Efforts in Washington DC

    Reviewed and edited by a celiac disease expert.

    Summary prepared by Nancy Kloberdanz as a joint effort of all the national celiac organizations GIG, CDF, CSA/USA, and ACS.

    Celiac organizations and patients from several states recently attended two very important educational lobbying 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, and were advocates for the Digestive Disease National Coalition (DDNC) and National Institute for Arthritis, Musculoskeletal and Skin Diseases (NIAMS). Our goals in lobbying were twofold. 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 in efforts to double 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.

    Celiac.com Sponsor (A12):
    The second goal was to increase awareness and educate about our particular disease. We accomplished this very well. On March 19, 2001, celiac disease had the largest patient representative group at the DDNC, and reached 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 explain how legislative decisions impact us individually, as well as share some facts about celiac disease/DH. Fact Sheets and other materials were left in each congressional office that we visited.

    DDNC represents many gastrointestinal disease organizations. We are pleased that all the national celiac organizations are members of this coalition. NIAMS and CPA-SDR (Coalition of Patient 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 by coalitions such as these is very important. These coalitions are strong forces with great influence in the medical areas they represent.

    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. In this regard we need your help, please:

    • Write to your Congress people 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).
    • 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), American Celiac 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 work throughout the year.
    • Plan to come to Washington DC next year. Often Congress people are very busy and sometimes selective in whom they see. They want to hear from their constituents. An example was a Senator from California who wanted to see constituents from her district. If there had not been a representative from California on a team, that senator would not have heard about Celiac Disease.
    • We need representatives from as many states as possible. Although, our lobbying efforts are at the mercy of the Congress schedule, these events often take place in March or April.
    • Offer to testify. Testifying before Budget and Health Committees is by written invitation only. First we must write letters asking permission to testify and then wait to be approved. It is a wonderful experience to express our story in this manner. Children and people severely affected by the disease are the most influential.


    User Feedback

    Recommended Comments

    There are no comments to display.



    Guest
    This is now closed for further comments

  • Get Celiac.com Updates:
    Help Celiac.com:
    Donate
  • About Me

    Scott Adams

    Scott Adams was diagnosed with celiac disease in 1994, and, due to the nearly total lack of information available at that time, was forced to become an expert on the disease in order to recover. In 1995 he launched the site that later became Celiac.com to help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives.  He is co-author of the book Cereal Killers, and founder and publisher of the (formerly paper) newsletter Journal of Gluten Sensitivity. In 1998 he founded The Gluten-Free Mall which he sold in 2014. Celiac.com does not sell any products, and is 100% advertiser supported.


  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Related Articles

    Destiny Stone
    Celiac.com 08/11/2010 - New studies from the United States, Europe and other Countries around the world indicate that the commonness of celiac disease has dramatically increased  in the last decade, possibly as much as four-times the amount seen in the 1950's. Most current studies show that celiac disease is prevalent in at least 1% of the general population.
    To determine when the prevalence of celiac disease started to increase, researchers at the Mayo Clinic analyzed blood samples stored from Air Force recruits taken in the early 1950's, and compared them with blood samples from this decade. Expecting to see at least 1% of the samples come up positive for gluten antibodies, they were surprised to find the numbers were much smaller than anticipated. The results of these studies suggest ...


    Diana Gitig Ph.D.
    Celiac.com 06/06/2011 - The interplay among the different immune cells mediating intestinal inflammation in celiac disease is complicated indeed. A subset of T regulatory (Treg) cells that express the Foxp3 protein are present in higher numbers in the intestines of patients with active celiac disease than in healthy controls. Treg cells act to suppress the immune system, providing tolerance to self-antigens. A recent report in the American Journal of Gastroenterology demonstrates that these cells proliferate upon the ingestion of gluten in order to suppress an overactive inflammatory response, but that their suppression is in turn suppressed by interleukin-15.
    First they confirmed that there is in fact increased expression of Foxp3+ cells in the intestinal mucosa of untreated celiac...


    Jefferson Adams
    Celiac.com 08/01/2014 - I sometimes have to remind myself that it’s the 21st century, and that some amazing scientific breakthroughs that sound like something out of science fiction are, in fact, real.
    Take for example the technology, recently developed by researchers at the University at Buffalo, that allows researchers to safely examine intestines using nanoparticles. The popular name for these orally administered nanoparticles suspended in liquid is ‘Nanojuice.’
    Human small intestines are each about 23 feet long and 1 inch thick. Located between the stomach and the large intestine, the small intestine is notoriously difficult to examine, hence procedures like biopsies, endoscopies, etc.
    The new technique, being developed by researchers at the University at Buffalo, uses ...


    Jefferson Adams
    Celiac.com 09/01/2014 - At present, the number of reported celiac disease cases in China is extremely low, and celiac disease is considered to be rare in that country. To determine the accuracy of this perspective, a team of researchers recently set out to compile an accurate estimate of rates of celiac disease in China.
    The research team included Juanli Yuan, Jinyan Gao, Xin Li, Fahui Liu, Cisca Wijmenga, Hongbing Chen, and Luud J. W. J. Gilissen. They are variously affiliated with the State Key Laboratory of Food Science and Technology, the College of Pharmaceutical Sciences, and the School of Life Sciences and Food Engineering, at Nanchang University in Nanchang, China, the Department of Genetics at the University Medical Centre Groningen of University of Groningen in Groningen...


  • Recent Activity

    1. - Julie Riordan replied to Julie Riordan's topic in Traveling with Celiac Disease
      3

      Any ideas for travelling

    2. - trents replied to SuzanneL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test

    3. - SuzanneL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test

    4. - Scott Adams replied to Braver101's topic in Coping with Celiac Disease
      2

      Constant sweating with celiac disease

    5. - Scott Adams replied to Julie Riordan's topic in Traveling with Celiac Disease
      3

      Any ideas for travelling


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,495
    • Most Online (within 30 mins)
      7,748

    Zofosho
    Newest Member
    Zofosho
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Popular Now

    • JustGemi
    • Linedancegal
    • Hannah24
      9
    • jessiemariecar
    • Rhonda H
  • Popular Articles

    • Scott Adams
    • Scott Adams
    • Scott Adams
    • Scott Adams
    • Scott Adams
  • Upcoming Events

×
×
  • Create New...