Advocacy
Life will become easier for celiacs as more people get diagnosed, making physicians, food manufactures, restaurants, and pharmaceutical companies more responsive to our needs. We can all do our part by spreading awareness one person at a time, as well as participating in advocacy projects on a larger scale.
On May 4th, the American Celiac Disease Alliance and other community
leaders gathered for a gluten-free labeling summit in Washington,
DC. And to kick-off National Celiac Disease Awareness Month,
gluten-free chefs constructed the world's tallest gluten-free
cake! .
Gluten Free Standards Are Needed More Than Ever -- Since Congress
passed the Food Allergen Labeling and Consumer Protection Act (FALCPA)
in 2004, the celiac community has waited anxiously for the FDA to
complete the gluten free labeling standards. Days have turned to
months and then to years.
Our patience is gone. Parents, patients, food manufacturers, and
health care professionals are frustrated and concerned about companies
placing 'GF' stickers on all sorts of products, including bottled
water. Without GF standards, companies aren't testing or verifying
ingredients, they are free to put 'Gluten-Free' on products without
regard to the health and safety of the end consumer.
Lawmakers need to know FDA hasn't finished the GF rules and they need
to hear it from you!
Take Action Today (go to www.americanceliac.org/advocacy.html) and
Tell Congress . . . . and tell a friend.
FDA responds about GF Definition: "Never underestimate the power of advocating and getting the word out
about the needs of the celiac community. The 11 ft 2 inch cake was a
great ice breaker, along with letters from across the nation.
Last night, at the urging of the American Celiac Disease Alliance (ACDA), FDA Deputy Commissioner Mike Taylor, addressed members of the
community attending the Gluten-Free Labeling Summit.
'I want people to understand that the FDA gets it. We're on this.
We'll get this moving.'
Those are his words, and there was no doubt,
he meant them." Emailed to the Celiac Listserv by Andrea Levario, Executive Director of the American Celiac Disease Alliance
A not-for-profit organization, the mission of the ACDA is to provide a uniform
voice on behalf of persons with Celiac Disease through education and advocacy
initiatives. It is "the national umbrella organization representing the needs of patients, researchers, manufacturers, and others in the celiac community." The
group was originally founded to help change the nation's food labeling laws
to include information about food allergens. They were instrumental in getting
the Food Allergen Labeling and Consumer Protection Act passed in 2004.
It is recommended to sign up on their website, www.americanceliac.org under "Advocacy" to receive the latest updates on legislation that affects celiacs. They will let you know how you can participate in advocating for the rights of celiacs, such as writing congressman, taking surverys, etc. Or without registering, you can always go to their website, click on "Advocacy", and then look for "Action Alerts".
This will show you exactly how you can easily and quickly advocate for a current
celiac legislative issue by simply sending an email to the appropriate person(s).
For further information contact:
info@Americanceliac.org
www.americanceliac.org
The Food Allergen Labeling and Consumer Protection Act (FALCPA) S.741 passed the House of Representatives on July 20, 2004. The bill was signed by President Bush on August 2, which means it is now in effect. A quote from the ACTF group:
"Every call, letter, meeting, petition, and crayoned picture paid off. Thanks to you - the celiac community - we beat incredible odds and got this bill passed. Congratulations!!"
This bill accomplishes several things:
-
It requires food packaging to clearly list any of the top eight ingredients that cause allergic reactions used in the product by Jan. 1, 2006.
- It closes a loophole that lets some ingredients be grouped as "natural flavorings." By 2006 manufacturers will need to specify what is in the natural flavorings.
-
It requires that a standardized definition of "gluten free" and its appropriate use be determined by the Secretary of Health and Human Services by the year 2008.
The passing of this landmark legislation may be greatly credited to the hard
work of the American Celiac Task Force (see above) and their letter writing
campaign that so many of us participated in. Although only wheat is in the
top 8 allergens (not barley, rye or oats) this will still have a tremendously
positive impact on those with celiac disease. Congratulations to all of us!
To read the actual bill, click on Food Allergen Labeling and Consumer Protection Act of 2004.
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www.TeamGlutenFree.org
Please visit our new and improved website, www.teamglutenfree.org ! You can find out what Team Gluten-Free is all about, our upcoming events, and download information packets. Please let your friends and family members know about our new site and new look! Thanks for your support and I hope to see you on the team soon!
Take care,
Carrie Owen
Team Gluten-Free , 9/14/07
"Please join our Team Gluten-Free mailing list to receive the latest race and event information. You can email me at info@teamglutenfree.org and simply provide your physical and email address. If you know of anyone who would like to receive periodic Team Gluten-Free news, please let them know about us!
Team Gluten-Free, a project of the Celiac Disease Foundation, a 501(c)(3) non-profit, public benefit corporation, is a training program for runners, walkers and cyclists who participate in races across the United States to raise awareness and funds for Celiac Disease. The money we raise goes directly to research and awareness programs and camp scholarships for Celiac children.
We will not provide your information to any other organization."
Thanks!
Carrie Owen
Team Gluten-Free, 9/25
Team GlutenFree is an endurance and sports training program. Runners, walkers
and cyclists participate in races across the United States to raise awareness
and funds for research and Celiac children’s camp scholarships. Since
our inception in 2005, we have raised more than $50,000 and sent 24 kids to
summer camp.
Team GlutenFree members receive:
- Comprehensive training schedules
- Race day team tank or t-shirt
- Fundraising materials and ideas
- Nutrition, hydration and clothing advice
- A once-in-a-lifetime experience to complete a personal goal and, at the
same time, help Celiac Disease research and awareness programs
- SUPPORT! SUPPORT! SUPPORT
Please visit our website, www.teamglutenfree.org and check out our
2007 race line up! Whether you are an experienced runner or beginning
walker,
anyone
can be a Team GlutenFree member! You can email us at info@teamglutenfree.org to receive an information packet!
JOIN THE TEAM!
Carrie Owen
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