Gluten Free Raleigh: Useful Resources: National Foundation for Celiac Awareness (NFCA)

Fundraising History

As of Dec 3, 2010
1) Jules Shepard Gluten Free Cooking Class - 2/28/2009 $100 donated to the University of Maryland Center for Celiac Research $400 donated to the National Foundation for Celiac Awareness (NFCA)

2) Gluten Free Raleigh Run/Walk Fundraiser - 6/13/2009 $915 donated to Gluten Free Week 2009 @ Camp Kanata (GIG sponsored camp in Wake Forest)

3) Jules Shepard Gluten Free Cooking Class - 7/12/2009 $300 donated to the University of Maryland Center for Celiac Research

4) GF 101 Class @ Rosie's Plate - 10/3/2009 $175 donated to Gluten Free Week 2010 @ Camp Kanata (GIG sponsored camp in Wake Forest)

5) GF 101 Class @ Rosie's Plate - 1/23/2010 $100 donated to Gluten Free Week 2010 @ Camp Kanata (GIG sponsored camp in Wake Forest)

6) GF 101 Class @ Rosie's Plate - 4/24/2010 $85 donated to Gluten Free Week 2010 @ Camp Kanata (GIG sponsored camp in Wake Forest)

7) Gluten Free Food Drive to benefit The Food Bank of Central & Eastern NC - May 2010 $925

8) GF 101 Class @ Whole Foods - 10/23/2010 $82.50 donated to Gluten Free Week 2011 @ Camp Kanata (GIG sponsored camp in Wake Forest)

Grand Total = $3,082.50

Celiac Disease Stats

16,860 Triangle residents with Celiac Disease
1 out of every 133 Americans (about 3 million people or 1% of population) has Celiac Disease.
97% of Americans estimated to have CD are not diagnosed.
CD has over 300 known symptoms although some people experience none.
Age of diagnosis is key: If you are diagnosed between age 2-4, your chance of getting an additional autoimmune disorder is 10.5%. Over the age of 20, that rockets up to 34%.
30% of the US population is estimated to have the genes necessary for CD.
2.5 babies are born every minute in the USA with the genetic makeup to have CD.
There are 15 states in the US with populations less than the total number of Celiacs in the US.
CD affects more people in the US than Crohn’s Disease, Cystic Fibrosis, Multiple Sclerosis and Parkinson’s disease combined.
500,000 new Celiac diagnoses are expected to occur in the US by 2012 -- thanks to efforts to raise public awareness of the disease.
People with CD dine out 80% less than they used to before diagnosis and believe less than 10% of eating establishments have a 'very good' or 'good' understanding of GF diets.
It takes an average of 11 years for patients to be properly diagnosed with CD even though a simple blood test exists.
The average cost of misdiagnosis is $5,000 - $12,000 per person per year. Improving the time to diagnosis could save the health care system millions of dollars annually in unnecessary medical care.
A recent study by Packaged Facts projects that the sales of GF food will reach $2.63 Billion by 2012. The GF market is also projected to hit $5 Billion by 2015.
GF foods are, on average, 242% more expensive then their non-GF counterparts.
The smallest amount of gluten which has been shown by a biopsy to cause damage to a Celiac is 0.1 gram per day - or 1/48th of a slice of bread.
The Food Allergen Labeling & Consumer Protection Act became law in 2006 allowing for easier reading of food labels for those with CD but the law only requires labeling of wheat. Nearly 5 years later, the FDA still has not finalized what it means to label a product Gluten Free.
12% of people in the US who have Down Syndrome also have CD.
8% of people in the US who have Type 1 Diabetes also have CD.
Among people who have a first-degree relative diagnosed with Celiac, as many as 1 in 22 people may have the disease. First degree relatives should be tested yearly for CD even if previous tests were negative.
There are currently 0 drugs available to treat CD.

Wednesday, January 28, 2009

Useful Resources: National Foundation for Celiac Awareness (NFCA)

The National Foundation for Celiac Awareness is a non-profit organization dedicated to finding a cure for Celiac Disease. NFCA is affiliated with the leading researchers in the US who are working toward this goal. NFCA will promote careers in Celiac Disease and fund fellowships in order to attract the best and the brightest to join the fight.

Origin
Founded in 2003 by Alice Bast (read her personal story here) who was diagnosed with Celiac Disease after visiting 23 physicians and suffering since 1988. The NFCA is located in Ambler, Pennsylvania just outside of Philadelphia but also has locations in Washington, D.C. and Seattle, WA.

Membership
None/Free

Mission Statement
The Foundation's mission is to raise awareness and funding for Celiac disease that will advance research, education and screening, and improve the quality of life of children and adults affected by this autoimmune disease through grant making and direct programming.

Features:

GREAT (Gluten-Free Education Awareness Resource Training) - more to come in an upcoming post on this program
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Celiac Survival Guide
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Web site: http://www.celiaccentral.org/
Email: info@celiaccentral.org
Phone: (215)325-1306

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Wednesday, January 28, 2009

Useful Resources: National Foundation for Celiac Awareness (NFCA)

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