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.
"We are pleased to announce that yesterday, April 6th, New Hampshire
Governor, John H. Lynch, Governor proclaimed May 2009 as CELIAC AWARENESS
MONTH. Governor Lynch's proclamation begins the countdown to May and the
month long celebration that will take place throughout the entire world as
we observe this special time. To read the proclamation go to the ACDA
website at www.americanceliac.org .
Lots of celebrations/events will be taking place as the entire world
observes this special time. From celiac walks to restaurant events as well
as special retail store and on-line promotions.
May is an exciting time for our community to generate awareness of Celiac
Disease. Why May? That's easy. The worldwide celiac community has sought to focus
attention during this month. The medical community is focused on digestive
diseases, observing 'Digestive Disease Week' (DDW) which brings together
gastroenterologists from across the country. When doctors gather, the
media follows.
By all means, celebrate awareness all the time. As a community, this is our
time to show our strength and give a special salute to May. Reflect on how
far we've come in making life easier, tastier and healthier for all of us
and how far we need to go to get our population diagnosed.
Watch for more updates here as we count down to May."
Beth Hillson
President
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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