December 2012

It is said…Once you choose hope, anything is possible.

“Celiac. Diagnosed May 2008.”

Dear CDF Supporters,

I cried when I read this banner on my son Henry’s Facebook page. After 14 long years of excruciating stomachaches, endless doctor visits, tests, procedures, more tests and even hospitalizations… my son had a diagnosis. He was relieved — and proud. I cried tears of joy.

Henry had just returned from a week at a celiac sleep away camp where he volunteered as a junior counselor. He had been diagnosed with the disease some months earlier, but was understandably angry and frustrated. Earlier that year we met an amazing woman, Ms. Elaine Monarch, the Founder of Celiac Disease Foundation (CDF). Elaine told us that while Henry’s adherence to a strictly gluten-free diet to avoid the disease symptoms was non-negotiable, the choice to live his life positively with the disease was his alone. It was a simple, entirely truthful fact. In fact, it was Elaine who recommended that Henry volunteer to work at the camp. There, so moved and so touched by the dozens of other children coping with their disease in a positive way, he understood his path. When he came home, he put this post on his Facebook page.

Earlier that year we attended our first CDF National Education Conference, where hundreds of CDF supporters dove into stacks of Bisquick® GlutenFree pancakes, proudly debuted by General Mills, one of CDF’s most ardent corporate sponsors . Henry was so happy that he joined the teen panel. Under Elaine’s guidance, Henry interned at the CDF National office, joined CDF Team Gluten-Free™ to fundraise, and gave television and newspaper interviews to promote celiac disease education.

Their message was resolute: the veil of ignorance must be lifted. This needless suffering of children must stop. No child with this manageable disease should ever go undiagnosed.

Looking back now, I must say we had certainly come a long way from that freshman year in high school when he missed nearly one-third of the school year for celiac-related symptoms.

For our family, it was a happy ending. Except… it turned out it wasn’t really the end.

In March of this year, Elaine asked me to take the position of Chief Operating Officer of the Celiac Disease Foundation. I am deeply proud that, with the help of generous volunteers and donors like you, I now promote CDF’s positive message of taking charge of your life, embracing your community, and paying it forward.

Today, I am writing to ask for your help as we at CDF prepare to enter a new year. I am hoping that I can count on you to renew your commitment to the Celiac Disease Foundation with a generous, tax-deductible contribution of $50 or more to support the breadth of our work in the coming year. This year, your annual contribution gift will be recognized as statement of appreciation for and celebration of the incredible vision and service of our Founder and now lifetime board member, Elaine Monarch.

Elaine is a hero to me and to thousands of parents and their children worldwide. In 1990, she was courageous enough to challenge the absurd notion in the medical and disease community that celiac disease was a rare and insignificant disease. Thanks to Elaine and her “kitchen cabinet” of a dozen like-minded individuals who came together and started the Celiac Disease Foundation, today CDF is recognized as a worldwide resource for the most current information on celiac disease and the gluten-free lifestyle. More important, celiac disease is now recognized as the most prevalent auto-immune condition in the world.

CDF is proud of our more than two decades of service and commitment to the celiac and gluten-sensitive community. As we reflect on some of this year’s achievements, we acknowledge with gratitude each of you who support our goals and mission and help us accomplish so much.

Through your generous support in 2012 CDF…

  • Promoted and collaborated with congressional representatives on legislation requiring the labeling of gluten in medications.
  • Partnered with Los Angeles County Department of Health Services and UCLA Medical Center to support a Celiac Disease Fellow who will study the effects of screening for celiac disease in the low-income population.
  • Partnered with corporations, including General Mills, The Clorox Company, Frito-Lay and Blue Diamond Growers for gluten-free initiatives that significantly enhance the quality of life for those with celiac disease and non-celiac gluten sensitivity.
  • Launched CDF Camp Gluten-Free at Camp Nawakwa, a weeklong sleep-away camp.
  • Served more than a million visitors through our website www.celiac.org and social media programs, which provide up-to-the-minute information about celiac disease and non-celiac gluten sensitivity research and the gluten-free lifestyle.
  • Managed a nationwide network of over 139 Chapters and Connections in over 41 states that generate awareness, provide outreach and localized support.
  • And…hosted the largest patient support and educational conference in the U.S. – expanding to a three-day conference and Expo in 2013.

CDF has had a positive impact in the lives of thousands of individuals with celiac disease and their families. BUT there is STILL so much more to be done.

The latest research finds that more than 3 million Americans have celiac disease. Yet only 1 in 6 is diagnosed. We need YOUR support so that we can reach the 2.5 million people with the disease but are not yet diagnosed. We need to reach out and educate doctors, the media, schools, and especially mothers, fathers and children. Only then can we help end the needless suffering.

CDF will continue to develop partnerships and collaborations in support of our goal to promote education and research for celiac disease. We must increase the rate of diagnosis. And we must shorten the time between the onset of symptoms and diagnosis. For more information on all our CDF programs, we invite you to explore this website.

Our holiday wish is that you will feel inspired to share in our mission! Help us honor Elaine’s decades of service in a manner I know she will appreciate… empowering us to empower families to stop the suffering of children.

I encourage you to advocate for celiac disease education, research and support of families and loved ones by embracing Celiac Disease Foundation.

To Your Health,
Marilyn
marilyn.geller@celiac.org

P.S. We want to thank you for honoring and celebrating Elaine with a year end gift. Give $100 or more and you will receive a complimentary year-long subscription to Delight Gluten-Free Magazine. Give $500 or more and receive an invitation for you and a guest to attend the CDF VIP Reception.