NFCA Fundraising Campaign

Matching Grant Can Yield $90,000!

I almost forgot that today is Celiac Awareness Day—the birthday of celiac disease research pioneer Samuel Gee!

How might one celebrate this event? Well, having just covered the recent webinar about Gluten in Medication led by the National Foundation for Celiac Awareness (NFCA), I figure it's a good time to mention that the group is in the midst of a fundraising campaign to raise $45,000 by September 24, 2008. A donor will match that amount, raking in $90,000 for the NFCA.

A nice thing about this effort is that the NFCA's Vanessa Maltin has described some of the ways the money would be used. Helpful!

Just to give you an idea of where the money will go, here are a few of the programs:

*Gluten in Medications.* Do you know all of the ingredients in all of the medicines that you take? Probably not! Current United States regulations do NOT require manufacturers to label the inactive ingredients in drugs. These inactive substances are called excipients and can be any one of a number of starches including wheat, corn, potato or tapioca. To help the celiac community and medical professionals understand the problem of gluten in medications, the NFCA partnered with the American Society of Health System Pharmacists. Together, our groups have held two educational sessions for doctors and pharmacists and have created resources for both patients and medical professionals.

*School Lunches.* Are you the parent of a child with celiac? If so, this resource is for you! With the help of the United States Department of Agriculture, the NFCA developed guidelines to help children and parents navigate their school's meal program. The guidelines explain federal laws and provide step-by-step instructions for getting a child special gluten-free meals at school. Additionally, the NFCA is working with an amazing group of school nurses and school psychologists to create a Getting Started Guide for Teachers to help ensure that every child is safe in the classroom.

*Related Diseases.* Celiac disease is directly related to several other diseases and conditions. The NFCA has worked with leading researchers and organizations to provide the latest information on how celiac disease and the gluten-free diet is related to these conditions. Diseases include: Dermatitis Herpetiformis, Type 1 Diabetes, Thyroid Disease, Infertility, Osteoporosis, Depression, Sjogren's Disease, Juvenile Idiopathic Arthritis, Intestinal Cancer, Peripheral Neuropathy, Down Syndrome, Turner Syndrome, William Syndrome, Liver disease and migraine headaches.

*Lifestyle Improvment Webinars:* The NFCA is working with a variety of professionals to bring you two sets of lifesytle seminars. All are available free of charge and can be viewed by anyone in the world! All you need is a working internet connection and a computer! There are two sessions every month. One is for New Patients. The others will be a variety of cooking lessons that will teach you to best utilize gluten-free products! Get excited!!

*Athletes for Awareness:* The NFCA has pulled together some of the top Athletes with celiac disease to bring you the Athletes for Awareness blog and PSA. Every month these 4 superstar athletes will share their stories of living with celiac disease while participating in competitive sports.

You can donate here.

GLUTEN-FREE CALENDAR CONUNDRUM!

I recently read some emails on the international celiac listserv that helped me to understand why there seem to be at least two celiac disease awareness months.

Let's start with a message from Beth Hillson, president of the American Celiac Disease Alliance (ACDA), about May being Celiac Disease Awareness Month:

In response to the question about May as Celiac Awareness month -- the overwhelming majority of celiac organizations and all of the Celiac Research Centers in the United States recognize May as National Celiac Disease Awareness Month.

Internationally, the Association of European Coeliac Societies (AECS) recognizes Celiac Disease in May and celiac events are held throughout the world to raise awareness.
(The association represents 26 countries of the EU - including Andorra, Austria, Belgium, Croatia, Czech Republic, Denmark, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Luxembourg, Malta, Netherlands, Norway, Portugal, Romania, Russia, Slovakia, Slovenia, Spain, Sweden, Switzerland, and UK)

The May observance in the United States was chosen to coincide with our international colleagues. It was also done in recognition of the many other medical conditions related to celiac disease that are observed in May. Celiac disease is still relatively unknown and being able to draw connections between these medical conditions and celiac disease helps to elevate its importance and enhance awareness. Some of the other May health observances include:

Digestive Diseases Awareness Month
Digestive Diseases Week
Food Allergy Awareness Month
Food Allergy Week
National Arthritis Month
National Osteoporosis Awareness and Prevention Month
Women's Health Week and Women's Health Check-up day

Organizations, Research Centers, and Companies supporting the May observance:

Celiac Disease Foundation
Gluten Intolerance Group
Westchester Celiac Sprue Support Group
American Celiac Disease Alliance
National Foundation for Celiac Awareness
University of Maryland Center for Celiac Research
University of Chicago Celiac Disease Program
Celiac Disease Center at Columbia University
Wm. K. Warren Celiac Disease Research Center UC San Diego
Bob & Ruth's Gluten-Free Dining & Travel Club
Ener-G Foods, Inc.
Enjoy Life BrandsT
Foods by George
Gluten-Free Living
GlutenFree PassportR
Glutino-USA
Kimball Genetics
Living Without
Pamela's Products
Prometheus Laboratories, Inc.
Savory Palate, Inc.

Its worth noting that October is Breast Cancer Awareness Month. It is extremely difficult for any condition, to compete for attention at that time. And since recognition and attention are key to raising awareness, May is a better fit.

Congresswoman Nita Lowey (NY) introduced legislation in 2004, 2006, and again, this year (H.Con.Res. 70) which emphasizes the designation of May as National Celiac Disease Awareness Month. That legislation now has 29 cosponsors and more are expected once Congress returns later this month.

I hope this helps clarify why May is supported and endorsed as National Celiac Disease Awareness Month.

Before considering why others consider October to be Celiac Disease Awareness Month, let's pause to recognize Celiac Disease Awareness Day—September 13, the birthday of Samuel Gee, who is widely considered to be the "discoverer" of celiac disease.

As for October being Celiac Disease Awareness Month, that is basically the province of the Celiac Sprue Association (CSA) and the Canadian Celiac Association (CCA)—which is, nevertheless, having its national conference in May!

Of course, here at GFNYC, every day is Celiac Disease Awareness Day—and every month is Celiac Disease Awareness Month!

GEE WHIZ: IT'S CELIAC AWARENESS DAY!

Thanks to the message board of the New York City Celiac Disease Meetup Group, I just became aware that today is National Celiac Awareness Day, as decreed in a Senate resolution!

Here's a copy of the resolution, courtesy of the National Foundation for Celiac Awareness.

Why today? Well, September 13, 1839, was the birthdate of Dr. Samuel Gee (pictured), widely credited with heightening awareness of the "coeliac affection" back in 1887. He didn't get it all right, but golly gee—nobody's perfect!