The Celiac Disease Foundation was founded in 1990. If you or someone you love has celiac disease, you are probably familiar with this organization. Its mission is to raise awareness for this autoimmune disease which affects over 2 million people, according to a 2003 study published in the journal, Archives of Internal Medicine (163(3):268-292).
History of Celiac Disease
The so-called "Coeliac Affection" was first identified in the first century A.D., but it wasn't until the 1920s that research took off and people with celiac disease could find hope for a cure. The bane of this condition has always been a lack of understanding and awareness which only compounds the psychological stresses of coping with the disease. Organizations such as the Celiac Disease Foundation provide a voice for those afflicted with this lifelong disorder.
Research
The foundation is one of the key players in on-going celiac disease research. In light of advances within other conditions, research by the foundation has studied the genetic components of this disease in order to identify possible applications in clinical practice.
For example, a 2008 study published in the American Journal of Gastroenterology (103(1):190-195) found genetic markers of HLA-DQ2 or HLA-DQ8 which can help definitively diagnosis the condition. The more doctors learn about the disease, the better they can treat it. Research by the foundation and others is essential for moving forward toward a cure.
Celiac Disease Foundation
The foundation uses several tools to fulfill its mission of raising awareness. One way this is accomplished is through their fundraising arm, Team Gluten-Free. Awareness is raised through community events involving cycling, running, and walking where team members take pledges participating as a Team Gluten-Free member. In this way, they can educate people who may not be aware of the disease or its implications.
The foundation joined other celiac organizations both in the United States and internationally to recognize May as Celiac Awareness month. This observation creates solidarity within the organizations involved with celiac disease and helps create a powerful voice for lobbying efforts.
Family Support
Perhaps one of the greatest functions of the foundation is its outreach and support for celiac patients and families. Through their website, the CDF keeps people aware of breaking news and events involving celiac disease. They give parents information needed to make good choices for their families. As you are probably aware, several otherwise overlooked foods contain gluten. The CDF addresses, with expert advice, many areas of concern such as eating out and vegetarian diets.The foundation also advises families on ways to deduct food costs for a celiac family member. To minimize cross contamination, companies often have to incur great expense to provide gluten-free food, which unfortunately is passed on to you, the consumer.
The CDF also provides ways for people to connect with local organizations and support groups. If you or a loved one has the disease, you know the importance of emotional support you receive is, especially if you are the parent of a CD child. Who else would understand the emotional drain of having to screen everything your child eats or having to figure out ways to make your child live a normal life despite so many dietary restrictions? In this way, the foundation has been a literal lifesaver to many people.
Celiac Disease and Children
The foundation also reaches out to the children who suffer from celiac disease through their Gluten-Free Summer Camp and kids' groups. CD children are given the precious opportunity to feel normal and connect with other kids their age who suffer the same burdens. Participants receive funding from monies raised by Team Gluten-Free. In this way, these children have the opportunity to experience one of the quintessential rites of being a kid-going to summer camp.
The foundation is also about family. Their support of R.O.C.K. or Raising Our Celiac Kids illustrates their commitment to helping families cope with celiac disease. The organization was founded in 1991 after founder, Danna Korn, learned that her son had celiac disease.
Thanks to the efforts of the Celiac Disease Foundation and other groups, you and your family have the support and information from an organization dedicated to raising awareness and pursuing a cure.
