If Capitol Hill didn’t know about gluten free labeling and celiac disease before the month of May…I am sure the majority of them know now.  Three weeks after Jules Shepard and John Forberger spearheaded a grassroots effort launching the Gluten Free Food Labeling Summit (aka 1 in 133) in Washington DC, they are happy with how it all turned out and what has happened since.

I had an opportunity to chat with them over the phone last week for about 40 minutes.  We discussed the day of the event and what’s happened since.

Gluten Free Summit Details

Cake Final

Photo Courtesy: Jeff Rasmussen

If you read this website you already know about the 12 foot cake.  And, yes, @Consuela on Facebook, to answer your question, Shepard said it weighed nearly 1 ton! But what you may not know is the behind the scenes moments that helped make this event what it was.

Shepard, Forberger and about 20 volunteers began their day on May 4th busy– they were at the hotel spending the day assembling the cake.  But before official event happened Shepard and Forberger got to meet behind closed doors with the FDA’s Deputy Commissioner of Food, Michael Taylor, Dr. Alessio Fasano from the University of Maryland’s Center for Celiac Research and others.  Shepard said Taylor and Dr. Fasano did most of the talking in their closed-door meeting. However, Shepard explained the point of the mini-meeting before the event, “We explained to them why this is important, relevant. why every day they don’t pass this rule makes it harder for people living gluten free”.

She says Taylor got it.  They noticed that first hand when he stopped and spoke to the crowd for 3 minutes and 42 seconds.  That’s exactly the time on the video of Taylor’s speech from that night, which is now posted for all to see, courtesy of Forberger and Shepard.  “It’s easy to say it’s a public health issue….It’s an individual issue, it’s a very personal issue….It’s a family issue,” Taylor said.  “People every day have to manage to deal with this condition.”

See Taylor’s full speech on gluten free labeling, courtesy of 1 in 133.

He “gave a speech which surprised us…his visit was a surprise too,” Forberger said. “We made enough noise online and off that they heard us loud and clear.”

Shepard added, “We have, in short order, brought this back to their attention and personalized it with the cake, the event and speaking to the Deputy Commissioner in a way that would animate them to work harder, faster for people who are gluten free.”

After the Summit

After the summit– and an incredibly long nap….Forberger and Shepard continue to make strides. Wednesday the group announced that their petition to support gluten free labeling has reached 9,368 signatures!

Plus, Shepard says lawmakers are being made aware of the cause!  “Now there’s a letter circulating called ‘Dear Colleague letter’ by Rep. Jim Moran of Virginia… this what they do when they want to get something done….The letter will go from the Representatives to the FDA to ask what the hold up is.” It appears he has taken action. In a News Commentary I found Wednesday from the Falls-Church News Press, gluten-free labeling was his topic,

“This week, I wrote a letter, signed by a number of my colleagues in the House of Representatives, to FDA Commissioner Margaret Hamburg urging her to take immediate action to finalize a definition of what constitutes a gluten-free product.” – Rep. Jim Moran, D-Virginia

Shepard added, “What’s been most exciting…to see the unity that’s come out of it.  To see everybody, competitor organizations coming together has been really powerful. Personally, it’s the best thing to come out of it.”

What’s next?

According to Shepard, “Best Case:  They submit the Revised Safety Assessment and do a comment period which could be 30 days.  After that they issue a ruling.”  At the earliest she speculates it could be August. But it still wouldn’t be in effect for at least a year. But she says “if the FDA isn’t doing what it’s supposed to…then I think we go back to Congress…revisit it by passing new legislation.”  But Shepard and Forberger maintain they are committed to remaining active to make sure this deal gets done!

Two more quick notes:  Forberger and Shepard  are very thankful for cake builders and the volunteers who helped put the cake together.

And @Jennifer who asked this question on The Savvy Celiac Facebook page — “What  happened to the cake afterwards?” Shepard said they cut away the edible cake, boxed it up and donated it to the Capitol Area Food Bank!


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