Dear CDF Friends and Supporters,
A number of our committed supporters have asked me why Celiac Disease Foundation applauds the FDA’s gluten-free labeling rule. As you well know, all FDA-regulated foods including dietary supplements bearing the claim “gluten-free” must contain less than 20 ppm [parts per million] of gluten. Health policy at Celiac Disease Foundation is directed by our Medical Advisory Board, comprised of globally respected experts in celiac disease and non-celiac gluten sensitivity. Our Medical Advisory Board members agree with the FDA scientific assessment that 20 ppm is the threshold level of gluten that is tolerated by those with celiac disease. The 20 ppm threshold is also consistent with gluten-free labeling standards in other countries.
I recognize that there are individuals who support a stricter standard. I believe, however, that this is a significant victory for our celiac and gluten-sensitive community as our medically required dietary needs have finally been validated by a federal government agency. We should be delighted the vast majority of consumers can finally be assured that food products labeled gluten-free are safe for consumption. And, as you read this, the FDA is reviewing the public comments it has received regarding options to limit gluten exposure from consumption of drug products. I encourage you to bookmark www.celiac.org to find the most current and concise information on FDA activities as the gluten-free labeling rule is implemented.
Despite this progress, 83% of the 3 million Americans with celiac disease remain undiagnosed. The fact is that the United States has one of the lowest celiac disease diagnosis rates in the developed world. This is a public health tragedy. Undiagnosed celiac disease is a life-threatening autoimmune disorder. For example, undiagnosed celiac disease is associated with a four-fold increased risk for lymphoma and other cancers.
We know there are significant challenges to improving this disgraceful diagnosis rate. But we at Celiac Disease Foundation are committed to moving the needle. We are rolling out a number of targeted programs designed to alert patients and doctors to consider celiac. I will be sharing more details with you in the days and weeks to come.
Finally, I want to thank you for your sustained support of Celiac Disease Foundation. Your gifts of money, time, and moral support are essential to our efforts to stop the needless suffering caused by celiac disease. Please continue to be generous.
To Your Health,
Marilyn G. Geller
Chief Executive Officer
July 2013
It is said that an apple a day keeps the doctor away. Thanks to the CDF Summer Interns, we in the office are eating a lot of apples, and other fresh fruits and vegetables. The Summer Interns are out to prove that a gluten-free diet can be nutritious, tasty and no more expensive than a gluten-filled one (check out youngandglutenfree.com to see for yourself). With the summer bounty comes summer vacations, airplane trips and on occasion, bacterial infections and prescription medicines.
While the Food Allergen Labeling Consumer Protection Act of 2004 required packaged food labels to identify all ingredients containing wheat and the proposed FDA gluten-free labeling rule requires packaged food labels to identify gluten, neither address medicine labels.
How does someone with celiac disease or non-celiac gluten sensitivity (or their caregiver) determine if a medicine is safe for ingestion? Some in our community consult glutenfreedrugs.com, some ask their pharmacist or physician, and some call the manufacturers directly. Many take the risk, ingesting potentially harmful medicines without question, presuming their physician would not prescribe an unsafe medicine.
Enter Representatives Tim Ryan (OH-13) and Nita Lowey (NY-17) to the aid of our gluten-intolerant community with H.R. 2003. Its predecessor, H.R. 4972, was introduced in 2012 but died in committee. The Gluten in Medicine Disclosure Act requires that “drugs intended for human use have a label identifying ingredients constituting or derived from a grain or starch.”
In order to move forward, this bill needs co-sponsors. If you do one thing today, click here to send a letter asking your representative to co-sponsor H.R. 2003. You have the power to keep this bill from dying in committee, and to make the prescription medicine supply safe for yourself and future generations.
On the topic of future generations, I am pleased to announce that the Weinstein family has established the Neil Weinstein 71.2 Education Fund in memory of my father who passed away this June.
Neil Weinstein earned two of the nation’s highest civilian honors, the Navy Superior and Meritorious Civilian Service Awards. My father believed strongly in the notion of a greater good, and of giving back to one’s community. This fund provides monies for Grand Rounds, where celiac disease experts educate other physicians on the diagnosis and treatment of celiac disease. Physicians are encouraged to consider celiac disease as a possible diagnosis, and to order the celiac disease blood screening panel.
My father and Henry had a very close relationship, sharing their love of science fiction, world politics and a good hamburger. It was a great relief to my father when Henry was finally diagnosed in 2008, as the scientist in him refused to believe the medical community’s continual response that there was nothing wrong with Henry and that it was “in his head.”
My father kept pushing me to get a proper diagnosis. Upon Henry’s diagnosis, my father became a strong supporter of Celiac Disease Foundation, of the work Elaine Monarch pioneered, and of that which I am privileged to continue.
A Tribute Fund is a gratifying way to honor a loved one and advance our collective mission of celiac disease advocacy, research and support.
To donate to the Neil Weinstein 71.2 Education Fund click here, or to request more information about establishing your own Tribute Fund, click here.
To Your Health,
Marilyn G. Geller
Chief Executive Officer
May 2013
Hello I’m Marilyn Geller. It is my pleasure to welcome you to the nation’s largest patient education conference and Gluten-Free EXPO. Whether this is your first conference or you are a veteran of many years, we are honored to have you attend this premier event of Celiac Disease Foundation.
I would like to thank Alice Bast and Kristen Voorhees of the National Foundation for Celiac Awareness. and Andrea Levario of the American Celiac Disease Alliance, members of the Gluten-Related Disorders Collaborative, who are here today, demonstrating the unity of tomorrow when all celiac groups work together with one unified voice.
As the Chief Executive Officer of Celiac Disease Foundation, I am pleased to share with you the vision of our esteemed Board of Directors.
CELIAC DISEASE FOUNDATON IS the trusted source for information for all people affected by celiac disease and non-celiac gluten sensitivity. We help people learn about, live with, and cope with celiac disease and non-celiac gluten sensitivity.
CELIAC DISEASE FOUNDATION WILL fight nationally and locally through our chapter and support networks to Break Down the Barriers to diagnosis, assuring a safe food and medication supply, finding new treatment and ultimately a cure. We will do this through our programs of advocacy, research and support by:
- Playing a leadership role in setting a national strategy for diagnosis and finding a cure.
- Being recognized by Congress and federal agencies, through our unparalleled Medical Advisory Board, as the leading celiac disease foundation to shape health policy and programs of research
- Being recognized by individuals with celiac disease, families, media, physicians, researchers and funders as the authoritative source for the latest medically sound information about celiac disease
- Having a comprehensive network that effectively delivers programs and services throughout the United States.
- Having a strong national and international brand identity.
Celiac Disease Foundation began as one woman’s dream. Today that dream is embraced by millions worldwide and it goes like this:
Imagine the day when celiac disease is universally recognized as one of the most common autoimmune disorders in the world, the disease that is effectively treated without need for severe medical intervention or a socially restrictive diet… Imagine that screening for celiac disease is routine, never questioned by health insurance or physicians, so that not a single person need suffer for years in search of relief. Imagine the day when all foods and medications labeled “gluten-free” meet or exceed the federal standards for gluten-free labeling… and that they are available in every grocery store and pharmacy from big cities to small towns for the same price as their gluten-filled counterparts. Imagine restaurants and food service facilities throughout the U.S., meeting the national standard for the delivery of gluten-free meals. Now imagine the day when anyone with celiac disease contemplating having children can be assured that their children and grandchildren will inherit a world where they never have to face the rigors of a medically required gluten-free diet, because effective treatment and mainstream food products are available.
With your generous support, Celiac Disease Foundation is paving the way for this future through our programs of advocacy, research and patient support. We work ceaselessly towards this level of recognition of celiac disease and non-celiac gluten sensitivity, so that one day soon, diagnosis and treatment will be routine.
As the premier foundation for celiac disease and non-celiac gluten sensitivity education, we work with public policy professionals to promote the labeling of gluten in food products and medications, and programs for testing and early diagnosis. We provide medical and nutritional information approved by our medical advisory board of internationally renowned experts, so that patients and caregivers can clearly distinguish fact from fiction. We support the systematic, thorough scientific investigation of celiac disease and non-celiac gluten sensitivity to understand the exact mechanism behind the disorders. We fund clinical studies to determine the effectiveness of screening programs. And we host the nation’s largest patient education conference each May, this year in Pasadena, California.
Today we strengthen the position of those with celiac disease and non-celiac gluten sensitivity, shaping the growing interest in the gluten-free diet through work with our sponsors to develop new and better products, and with the medical and policy communities and the media to promote our cause. But we will not stop here. Our goal is to continue to improve diagnosis and treatment for all who are at risk for gluten-related disorders, as we achieve worldwide recognition of the medically-required needs of our community.
Being a Celiac Disease Foundation supporter guarantees future generations will have advanced solutions for celiac disease and all gluten-related disorders. We put your donations toward the most effective means of accomplishing these goals. In exchange, we bring you the most trusted information available and offer you a premier opportunity to network with experts and peers.
Celiac Disease Foundation began as one woman’s dream. In 1990, celiac disease was considered a rare disease, with 1 in 250 people estimated to have it. There were NO gluten-free products in main stream grocery stores, and NO ONE had heard of the gluten-free diet.
Today celiac disease is recognized as one of the world’s most common autoimmune disorders, with 1 in 133 estimated to have it, there is a profusion of gluten-free products available, and Celiac Disease Foundation is recognized as the nation’s leading voluntary health organization for celiac disease.
One woman had a dream. Elaine Monarch, please stand and be recognized.
It is my honor to carry on Elaine’s torch, and our honor to help you help. Thank you on behalf of the millions of patients and their loved ones that you collectively represent. And thank you for allowing me to share Henry and my story.
To Your Health,
Marilyn G. Geller
Chief Executive Officer
February 2013
It is said that a man is at his tallest when he stoops to help a child. On behalf of the Celiac Disease Foundation (CDF) and the community we serve, thank you for the generous response to our Gift of Hope campaign. CDF is proud of our commitment to educate and communicate a greater awareness of celiac disease and non-celiac gluten sensitivity, and to advocate for early diagnosis. We greatly appreciate that so many of you have been moved to share your story of difficult diagnosis, inspiration and hope.
A very special thank you to Quest Diagnostics and the cast and crew of Hallmark Channel’s Home and Family show Watch Here for their Gift of Hope in promoting celiac disease awareness and the need for early testing, and to Delight Gluten-Free magazine for their generous donation of a complimentary annual subscription for each of our Friend donors.
This month we open registration for two very important programs. The first is the CDF National Education Conference and Gluten-Free EXPO to be held May 4th and 5th at the Pasadena Convention Center in Pasadena, California. On Saturday, May 4th, Joseph Murray, MD, medical director of the Mayo Celiac Disease Clinic and world expert in celiac disease and non-celiac gluten sensitivity, delivers the keynote address discussing the latest developments in research and diagnosis. The “Breaking Therapies in Celiac Disease” panel with medical experts from Alba, Alvine, BioLineRx and ImmusanT will discuss the race to a cure. Tricia Thompson, MS, RD, known as the “Gluten-Free Dietician”, will present “Innovations in the Gluten-Free diet”, moderating a panel of top industry dieticians including General Mills, Frito-Lay, Trader Joe’s and Anne Lee from Dr. Schar. Each session will include ample time for audience questions and answers. Attendees on May 4th will be treated to the world debut of three “Oh My!” gluten-free products from one of CDF’s sponsors, as well as gain exclusive access to the Gluten-Free EXPO with more than 75 exhibitors sampling goods and services for the gluten-free lifestyle. Join us in the Gluten-Free Beer Garden, feast to your heart’s content, network with other patients and family members, and go home with a goodie bag stuffed to the brim with samples and coupons of gluten-free goodness. Attendees may also choose to indulge in a GF Pancake and Sausage breakfast, and break GF bread at lunch and dinner with others who can’t wait to swap stories about adventures in dining out.
On Sunday, May 5th, CDF opens the Gluten-Free EXPO to the public (Saturday attendees get in free on Sunday!) with celebrity appearances, live music, cooking demonstrations, and endless sampling. Join CDF as we introduce the larger community to what it really means to be gluten-free!
Our second program is CDF Camp Gluten-Free™, a weeklong strictly gluten-free sleepaway camp for children (campers) and young adults (Mentors) with celiac disease or non-celiac gluten sensitivity. Held July 15th – 19th for campers and July 13th – 19th for Mentors, at Camp Fire Camp Nawakwa in the gorgeous San Bernardino Mountains, activities include swimming, hiking, cooking outdoors, canoeing, arts and crafts, singing, drama, games, nature walks, archery, rock wall climbing, making new friends and thriving in a supportive, gluten-free environment.
[youtube http://www.youtube.com/watch?v=G_bjfEf0bjA?rel=0&w=420&h=315]
CDF Camp Gluten-Free™ is able to offer reduced camp fees and provide camperships for children in need through the generous, tax-deductible support of individuals, foundations and corporations. Should you feel like being your tallest today, click here to donate.
To Your Health,
Marilyn G. Geller
Chief Executive Officer