Where in the Wide World of Celiac Disease and Gluten-Sensitivity is the Media Coverage of our Awareness Month?
BUT FIRST - BREAKING NEWS: As we are speaking of Raising Awareness, today we are also announcing the OFFICIAL OPENING the on-line store of our new family business: GLUTEN-FREE PRAIRIE. My son, Jeremy, and I have teamed up to bring some amazing and healthy Gluten-Free Products to the Celiac and gluten-sensitive consumer. Please check us out today.
In honor of Celiac Disease Awareness Month we have a "once in a launch-time" deal for you. Just use the promo code: "aware" at checkout. We are proud to have a sponsorship from the Celiac Disease Foundation. A portion of GFP sales will always go toward programs to raise awareness.
and now...the post:
I will admit to being a bit of an activist. Among the recollections of other family outings, my children often include stories about joining their father and me to protest on the lawn of the Federal Building in Los Angeles.
And Wil and I walked the picket line many times in support of our union, the Screen Actors Guild. For the past 7 years I have made raising awareness my mission. May is National Celiac Disease Awareness Month, and every year at this time our nationwide community comes together in an effort to raise awareness about the "# 1 Disease You've Never Heard Of." Raising awareness will increase diagnosis which will save lives. Lights, Camera, Action....where are they? I'm not seeing any press coverage from our efforts this year. There is so much happening in our Gluten-Free World, I thought some press coverage would be a slam-dunk. Along with the Celiac Disease Foundation, we emailed the networks, sent out press releases and press kits. Am I missing something? I have not seen one article. Nothing! Now we all know that Celiac is not a sexy disease, and I also know that we're not going to get the "if it bleeds it leads" front page story, but what does a girl have to do to raise awareness?
Time is of the essence now. In a little over 3 weeks it will be somebody else's month! So out of a sense of desperation, I have decided to compile a list possible story angles here hoping that maybe one of them will somehow find its way to a news desk somewhere on the planet and possibly resonate with a gluten-sensitive reporter or editor.
1) This year marks the one year anniversary of the passage of SR7, the California legislation spearheaded by me and Senator Huff's office, along with the Celiac Disease Foundation, designating May as Celiac Disease Awareness Month in California. You can read all about it here: "So you say you want a gluten-free revolution" in my post at that time.
2) It's been one year since I wrote and co-produced this Public Service Announcement for the Celiac Disease Foundation. You can see it here: Celiac PSA. Now to be fair, I must mention how much we appreciate the fact that the 30 & 60 second spots are currently airing nationwide - usually at 3 a.m. Sure would be awesome to see them on prime-time this year, this month. And, YES, they are still available, fully licensed and free for the asking. If you'd like one, contact me for information.
Some pretty nifty accomplisments that might make for a good story, right?
BREAKING NEWS: (now I know where the media is) I was polishing this post yesterday when the first press release came across my desk touting Dominos Pizza's new Gluten-Free Pizza. I read it with interest as good, safe GF Pizza is always on my GF Bucket List. Before I had time to read the disclaimer, stories were popping up all over the newsfeeds. I jealously thought of the millions of eyes that must be on this release, while we struggle to reach some of the undiagnosed 97% . I shook it off and finished reading that release and disclaimer. And that was IT! One quick knee-jerk reaction later I had dusted off my activist pants and I was off to the races. First I posted my outrage to the Celiac ListServ and Face Book. Next I shared my "thoughts" with Dominos Pizza. Then I spent the rest of the day answering emails of support. Thank you to everyone who weighed in. You know who you are.
If you missed it, here is their official release:
Dominos GF Pizza Official Press Release
Yes, I know this post is long enough so I won't spend anymore time on Dominos. Well, maybe just a little more. To add insult to injury I also watched the Hi-Definition, professionally edited, slick-grapic-filled YouTube video starring Dominos CEO, J Peter Doyle as he tried to make us feel better sharing his excitement about their "mildly gluten-free" pizza that none of us can eat and might make our kids sick: "Now, the whole group can enjoy Domino's with the addition of our new Gluten Free Crust." And then "While Domino's new Gluten Free Crust is appropriate for those with mild gluten sensitivity, Domino's and the NFCA do not recommend it for those with celiac disease."
"Whole Group"? What does that mean? Whole group? Like the human race? ...all inclusive.... available to everyone? Sorry. Mr. Doyle's definition of "Whole Group" only includes those with "mild gluten sensitivity". Whatever that is. There must be an entire new dictionary of terms over at Dominos. Wonder what they call Salmonella...extra protein? Have to say I'm also disappointed to see the way they used one of our most highly respected organizations to try to legitimize themselves.
Bottom-line: I'm sure Dominos lawyers dotted every "I" and crossed every "T" in those press releases. In my opinion (shared by a majority of the gluten-free community), they are reckless, misleading and irresponsible. Dominos Pizza is just another money-hungry corporation trying to cash in on the fad element of the Gluten-Free Movement. Shame on Domi-no-no's
Think those words might get me sued? Awesome. We need the publicity. Hope it happens during our Awareness Month.
At this point I'm chanelling Peter Finch from the movie "Network" For those of you mature enough to remember the movie, you'll remember this line: "I'm mad as hell and I'm not going to take it anymore." Seriously, what does it take to raise awareness about the "#1 Disease You've Never Heard Of"? I share his sentiments exactly.
Ok, I feel better now. If you'd like to share your personal thoughts with Domi-no-nos, simply click on this link here: Tell Dominos what they can do with their new GF Pizza
OK. Back to more of those "feel-good gluten-free" news story ideas:
3) This summer, for the first-time ever, CDF will host it's first Celiac Kids Camp in the beautiful San Bernadino Mountains outside of Los Angeles. There are others around the country but this is first for Los Angeles and CDF.
Sending Celiac kids to summer camp for possibly the first time in their lives would make a lovely and informative "free-good" story. The press hasn't bitten on that one either. Not even a nibble.
So now I'm feeling a little like Glenn Close in Fatal Attraction:"I will NOT be ignored." Remember that? As I recall, things didn't turn out well after that statement.
4) Legislation: Reps. Tim Ryan (OH) and Nita Lowey (NY) have introduced HR 4972 to require drug manufacturers to label the source of a drug's inactive ingredients. This is huge! If you haven't already signed the petition, you must do so by May 8th (today). It's so easy. Simply click here: to sign the petition.
5) Pam Mac D's the FIRST completely GF market in LA County celebrates their one-year anniversary this month.
6) My friend Brandy Wendler is Mrs. Alaska International (she's the one on the right). This year Brandy spearheaded leglislation to designate May as Celiac Disease Awareness Month in Alaska. Brandy is now competing for Mrs. Universe International. With her platform focused on raising awareness, Brandy is a fantastic ambassador for our cause. Please check out Brandy's Site here to support her efforts.
So much opportunity to raise awareness and only 23 days left of our official MONTH.
7) Kyra Bussanich, co-owner of Crave Gluten-Free Bakeshop in Lake Oswego, Oregon made quite a gluten-free splash recently when she WON Cupcake Wars
8) Cupcakes for a Cause: Last year Beth Hillson was part of the team that built the world’s tallest gluten-free cake in Washington DC. From her blog: "The purpose was to bring attention to the need for g-f labeling regulations and standards. The FDA replied and we now await the regulations that should be out by the end of September. In place of a huge cake, this year we (the American Celiac Disease Alliance) are making cupcakes to honor the personal impact this rule-making will have on each of us." To do so, Beth is asking people to make cupcakes and post pictures on the ACDA Cupcakes for a Cause Facebook page https://www.facebook.com/events/299735400109718/ or the Alliance’s home page: https://www.facebook.com/events/299735400109718/ .
There is a theory that all of us are but 6 Degrees of Kevin Bacon. If that is true then certainly one of you can forward this story to Diane Sawyer or George Stephanopolis. How could they resist? A story focusing on any one of these story angles would move us closer toward our goal of Raising Awareness, increasing diagnosis and saving lives. I am exhausted. For now, I will leave it in your capable hands.
That's All folks.
Disclaimer: I am not a Doctor, lawyer, rocket scientist or King. Everything on this website is provided for informational and educational use only and should not be used for any diagnostic purpose. Always consult with your physician regarding your health concerns.
You pack more information into a blog post than anyone I know. Plus, you entertain us along the way! What a fun ride this post is -- everything from sort-of-gluten-free-pizza to Mrs. Alaska (wonderful lady) to Glenn Close in Fatal Attraction (not-so-wonderful lady). Thanks for all you do, Deb!
Melissa
PS I know the whole drama about Domino's, but the bottom/bottom line is, that stuff is not healthy, even if you don't need it to be GF. Make your own awesome GF pizza with beets, cauliflower, kale and garlic (or, any other wonderful assortment of healthy ingredients). There are so many good GF crust recipes out there now. Hey, how about we try making one with your ground oats? Hmmm? I have a grain grinder. I might have to try that. Ground oat pizza crust topped with veggies? Wow, what a power meal that would be. I'll keep you posted. Oops, my PS is longer than my comment. =)
Posted by: Melissa | 05/09/2012 at 11:57 AM