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GREAT3 Workshop – Putting Celiac Disease on the Map
When I was diagnosed with celiac disease over 20 years ago, the only organizations focused on this condition were support groups for those who were already diagnosed. No one was advocating for awareness of this autoimmune condition or pushing doctors to recognize the symptoms, order the blood test and a follow-up endoscopy. That’s why I started the National Foundation for Celiac Awareness (NFCA) – to help people get a lifesaving prescription of the gluten-free diet and have access to tasty, affordable gluten-free food.
Over 11 years since the launch of NFCA, I will represent our community as the U.S. Food and Drug Administration (FDA) sets its sights not only on improving the quality of life for those with celiac disease, but also helping us live longer and healthier lives.
This month, I will be speaking at a landmark meeting hosted by the FDA. The Gastroenterology Regulatory Endpoints and the Advancement of Therapeutics (GREAT) 3 Workshop being held in Silver Spring, Maryland on March 30-31, 2015 will examine the unmet needs of those with celiac disease and look for treatments beyond the gluten-free diet, a regimen that research is proving to be inadequate to keep most of us healthy. I am proud to be in the company of leading scientists and celiac disease experts from across the country.
Kristin Voorhees, MA, NFCA Director of Healthcare Initiatives, will be joining me and other NFCA team members at the GREAT3 Workshop. Kristin and I are honored to serve as the voice of the celiac disease community. NFCA is extremely invested in learning your thoughts and opinions on a wide variety of topics. Everything you tell us on Facebook, in feedback surveys and beyond helps us to best relay your needs to the FDA.
Here’s a perfect example: A few weeks ago, we asked about your most common symptoms when you’re exposed to gluten. Your answers, featured in the graphic to the right, will be included in my presentation at the GREAT3 Workshop. Our goal is to prove that not one symptom dominates more than another in celiac disease; each and every person is different and copes with various symptoms from gluten exposure.
You’ll have a chance to participate in the GREAT3 Workshop. The FDA will allow community members to tune in remotely. We will share the specific details with you as soon as they are made available by the FDA. To learn more about the GREAT3 Workshop, visit our Upcoming Events listing.
Following the Workshop, NFCA will be hosting its own webinar entitled, “The Future of Drug Therapy for Celiac Disease: Get the Honest Facts.” Tune in to learn more about the evolving field of celiac disease drug development and the important role you play in this process
The next era in celiac disease research is here! Stick with NFCA as we continue to work with you and researchers to forge pathways to a cure.
To our GREAT health,
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By Chef Oonagh Williams
CÉAD MILE FÁILTE
AKA Egg and Smoked Salmon Torte – lunch, dinner or appetizer
This recipe isn't written in stone. Make as much egg salad as you like using your own favorite recipe. I do like adding green of green onions or chives to the salad. I don't add pickles or chopped celery since I like a smooth mix. Smash the hard boiled eggs to make them very creamy or just use the egg slicer in both directions and leave in little pieces. I like to use a mix of mayo and plain Greek yogurt for better calories and the tang of yogurt. Again, make the salad to your taste.
IRISH SODA BREAD
This recipe tweaks my gluten-free soda bread recipe even more. Remember that it is very difficult to reproduce the tastes of these original dishes since they were prepared at a time when all food was extremely fresh. In Ireland, we had our own butter and milk, the flour came from a local mill, and your meat and vegetables were from your own land, particularly in the country.
I keep playing with the recipe for Irish soda bread, trying to get a taste even closer to what I grew up with. Both my parents were born in Southern Ireland, so soda bread was almost a daily bread growing up, even in London, England. I like a crusty outside, but my mother's was always softer. This is a stronger flour blend, so it needs more liquid.
About Chef Oonagh Williams
Chef Oonagh Williams has just been chosen as one of New Hampshire's WZID's Outstanding Women for 2015. See her at the WZID Women's Expo Saturday, March 7 and watch her on WMUR's Cooks Corner on Friday, March 13 make St. Patrick’s Day recipes. Like her at Gluten Free Cooking with Oonagh on Facebook. Chef Oonagh will be at Concord Co-Op on Thursday, March 12, Atkinson Library on Tuesday, March 24 and Westford MA on Thursday, March 26 – programs on the power of food – best medicine or worse poison. Chef Oonagh also does Corporate Lunch ‘n Learns and speaks at various celiac disease conferences. Check the newsletter archives for more of Chef Oonagh's St. Patricks Day recipes, beef in gluten-free beer, Irish Chicken Rolls, Sticky Toffee puddings and more. Email: [email protected].
The field of celiac disease research is moving rapidly, and some of the most exciting developments have been in the area of pharmaceutical therapies. Here at NFCA, we regularly talk to the community about their interest in a drug to treat celiac disease, and we hear your feelings of hesitancy and worry about the implications of a new treatment for the genetic autoimmune disease. Today, it’s time to open an honest conversation about the future of celiac disease treatment and management.
Join us for a special webinar event as we speak with celiac disease experts and NFCA Scientific/Medical Advisory Council members Sheila Crowe, MD, UC San Diego, School of Medicine and Vice President of the American Gastroenterological Association (AGA) and Ritu Verma, MD, Director of the Center for Celiac Disease and the Lustgarten Endowed Chair for Clinical Care of GI Motility Disorders at The Children's Hospital of Philadelphia. Alice Bast, President and CEO of NFCA, and Marilyn Geller, CEO of the Celiac Disease Foundation, will also join the discussion representing the voice of the patient and the caregiver, respectively.
This free webinar will be moderated by NFCA Director of Healthcare Initiatives Kristin Voorhees, MA, and will be airing after the GREAT 3 Workshop, a landmark event being hosted by the U.S. Food and Drug Administration (FDA). Learn more about GREAT 3 here.
When: Tuesday, March 31, 2015
Where: Your computer
Time: 7 p.m. to 8 p.m. EDT/4 p.m. to 5 p.m. PDT
This webinar is free of charge and the only requirement to participate is an internet connection!
Do you feel like a broken record when it comes to explaining your gluten-free needs? Have you struggled with finding the right way to approach a conversation with people who don’t exactly understand celiac disease or gluten sensitivity? If you can relate to these experiences, then our Advocating for Your Gluten-Free Needs campaign is for you!
Throughout March, NFCA staff members and gluten-free bloggers will share specific ideas for changing the conversation to get the best results possible. We’ll be covering more than just the basic topics. Here’s what’s to come:
Thanks to Rudi's Gluten-Free Bakery for sponsoring this blog series!
Introducing NFCA’s Blogger Ambassadors! We’ve gathered a group of bloggers who are dedicated to helping the community navigate the ins and outs of living gluten-free. We know that we’re stronger together. So, we’re teaming up to raise awareness and make sure you have the tools you need to live life to the fullest.
Meet the 2015 Blogger Ambassadors!
Gluten-free options in restaurants are constantly increasing, but the food safety side to cooking gluten-free has been slow to catch up. NFCA is working to give food safety a boost for the celiac disease and gluten sensitive communities through the GREAT Kitchens and GREAT Schools, Colleges and Camps programs. These comprehensive training programs teach foodservice professionals both the ‘how’ and the ‘why’ when it comes to gluten-free cooking.
Now, you can get a glimpse of the programs through A Taste of GREAT, a portion of the training program pulled out just for you. By watching the program, you’ll be able to work with your local establishments to get them trained and you’ll be better prepared to ask the questions you need to dine safely away from home.
Your $10 covers NFCA’s costs for delivering the program. Enjoy!
By Ishani Nath
P.F. Chang’s China Bistro is being sued over claims that its gluten-free menu discriminates against those with celiac disease.
Anna Marie Phillips filed suit against the Chinese food chain claiming that an added charge applied to gluten-free menu items violates the Americans with Disabilities Act (ADA).
The restaurant’s designated gluten-free menu includes 19 appetizer, entrée, and dessert options that either contain no gluten as prepared or can be modified to be gluten-free. These items are each $1 more expensive than their gluten-containing counterparts.
Photo Credit: AllergicLiving.com
Traveling is stressful enough, but add in the extra worry of safely eating gluten-free away from home and travel can seem downright impossible. Here at NFCA, we believe everyone should have the opportunity to live life to the fullest, and that includes travel! Anna Sonnenberg of the blog Gluten-Free Jet Set, and Erin Smith of the blog Gluten-Free Globetrotter, will join us on March 19th to give their best tips for gluten-free travel. Learn what to pack in case you find yourself in a pinch, how to work with hotels and airlines to get gluten-free accommodations, and much more! Whether you’re someone who likes to plan every detail or wing it, this free webinar is for you! Tune in and see what adventures await.
It is well known that a diagnosis of celiac disease is followed by a slew of challenges and roadblocks – from a significantly higher grocery bill to associated health concerns to limitations on socializing, travel, dining out and everything in between. What if we could prevent these roadblocks altogether?
Researchers have increasingly been focused on the prevention of celiac disease in recent years, testing many different theories. Learn about these studies and how researchers are working to set a different course for those who are at risk of developing celiac disease. Join experts Alessio Fasano, MD, Carlo Catassi, MD, and Sabine Vriezinga, MD in this very special webinar event as we delve into the latest endeavors in celiac disease prevention research.
Celiac Awareness Day with the Philadelphia Phillies is back! This year, it's happening right in the middle of May - Celiac Awareness Month. Come out to support the National Foundation for Celiac Awareness (NFCA) and help us raise awareness of celiac disease, non-celiac gluten sensitivity ('gluten sensitivity') and the gluten-free diet.
Just like in years past, there will be a dedicated gluten-free concession stand and the NFCA gang will be on the 200 level by the Hall of Fame to provide educational materials to game attendees. Stop by NFCA's table to meet the team and enter a free raffle to win a basket of Phillies memorabilia and other fun surprises. Our friends at Aramark also will offer a free raffle for your chance to win four tickets to a regular season game in section 118, a complimentary food coupon (valued at $40) and a free parking pass.
Grab your tickets by May 1 before they're sold out! A portion of ticket sales benefit NFCA's free programs and services.
Get the full scoop on Celiac Awareness Day with the Philadelphia Phillies and buy your tickets today!
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