02/01/2019

February 20, 2019

02/01/2019


COLUMNS

Note from Alice

From the Desk of the CSO

Cooking with Oonagh

HEALTH/WELLNESS

FDA Fast Tracks Celiac Disease Vaccine

Designation highlights need for new treatments for patients

At-Home Test for Monitoring Celiac Disease Launches

Patients can now get antibody test results to help manage the gluten-free diet

Note from Alice: Meet Arturo Chacón-Cruz

Dear Beyond Celiac Community,

I am beyond pleased to introduce you to Arturo Chacón-Cruz. If you are a patron of the opera, you may already be familiar with Arturo, or at least his voice. That is because Arturo, a native of Mexico, is a leading operatic tenor who’s performed over 50 roles – such as Cavaradossi in Toscain renowned theaters across the globe.

A protege of the world-renowned Placido Domingo, Arturo boasts a wide repertoire and has won a number of honors and awards, cementing his status as an acclaimed performer. So why am I introducing you to this famous opera singer? That’s because Arturo, his son and his mother have all been diagnosed with celiac disease. And in pursuit of a brighter future for his family – and everyone dealing with this serious autoimmune disease – he has signed on to be the official spokesman of Beyond Celiac!

Arturo Chacon Cruz celiac disease beyond celiac opera singer

Near the end of last year, Arturo reached out to me about getting involved with Beyond Celiac. Our mission of accelerating research for treatments and cure deeply resonated with him, for his own complications with the disease but more so for his young son, who continues to struggle greatly with having celiac disease. Not that Arturo didn’t struggle himself. He shared with me that prior to diagnosis he was felt ill constantly, prematurely old and his hair was falling out. As a world-traveling opera singer, he also has to deal regularly with finding safe food on the road, in the air, and at restaurants around the globe. For these reasons and more, he wants to help get the word out and help raise much needed funds for celiac disease research. According to Arturo, he chose to work with Beyond Celiac because of our innovative approach, our commitment to driving research, and putting the right people and the right resources in place to truly make a difference.

Since our initial call, it’s been a delight getting to know Arturo and his family. His positive spirit is infectious and his talent and charms are undeniable. As our spokesman, he plans to bring the same intention and intensity he brings to the stage to raising awareness and research funding.

You can view our first collaboration together, a video introduction, here:

And if you’re in the Philadelphia area this October, be sure to attend the Beyond Celiac Gala, which will feature a very special concert with Arturo (and of course, a delicious gluten-free dinner).

In the meantime, if you’d like to learn more about Arturo, you can follow him on Twitter and Facebook, visit his website and see him perform.

I’m so looking forward to what Arturo, Beyond Celiac and our community can do together in 2019 to make a real difference in the lives of those with celiac disease.

To living life Beyond Celiac,

Alice


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From the Chief Scientfic Officer (CSO): Marie Robert, MD

Beyond Celiac expands scope of expertise

It gives me great pleasure to announce the creation of the new Beyond Celiac Scientific Advisory Council (SAC), whose purpose is to establish research priorities to accelerate therapies and a cure for celiac disease. Our internationally recognized council members bring a broad spectrum of expertise that includes not only celiac disease, but clinical and basic science immunology as well as pharmaceutical development.

The SAC will assist me in developing a dynamic strategic research agenda, and in establishing the Beyond Celiac research granting program. In creating the agenda, emphasis will be placed on leveraging current knowledge and bridging critical gaps in information on the mechanisms of injury in celiac disease. Employing a range of strategies, from bench to bedside, Beyond Celiac will attract, enable and increase the pool of outstanding basic and clinical scientists directing their efforts towards celiac disease.

Council members include:

Marie Robert, M.D., SAC Chair, Chief Scientific Officer, Beyond Celiac, Professor of Pathology and Medicine, Yale University

Joseph Murray, M.D. , professor of medicine at the Mayo Clinic and a gastroenterologist in the division of gastroenterology and hepatology, department of internal medicine

Bob Beall, Ph.D. , Beyond Celiac board member and former president and CEO of the Cystic Fibrosis Foundation

Gail Hecht, M.D. , professor of medicine and microbiology/immunology and chief of gastroenterology and nutrition at Loyola University, Chicago

Edwin Liu, M.D. , director of the Colorado Center for Celiac Disease at Children’s Hospital Colorado and professor of pediatrics, gastroenterology, hepatology and nutrition, University of Colorado School of medicine

Daniel Leffler, M.D. , director of research, Celiac Center at Beth Israel Deaconess, associate professor of medicine, Harvard Medical School, and medical director, Takeda Pharmaceuticals

Stephen Miller, Ph.D. , director of the interdepartmental immunobiology center at Northwestern University Feinberg School of Medicine and research professor of microbiology-immunology

Kari Nadeau, M.D. , professor of pediatric food allergy, immunology and asthma and director of the Sean N. Parker Center for Allergy and Asthma Research, Stanford University

These are exciting times for research at Beyond Celiac. I look forward to sharing our progress soon.

Gluten-Free Cooking with Oonagh

Gluten-Free No-Bake Wicked Chocolate Cake

Prince William had this cake at his wedding to Catherine Middleton… aka it’s royally good!


GET THE RECIPE

Gluten-Free Lithuanian Apple Cake

Also known as Obuolinis Pyragas.

About Chef Oonagh Williams


Chef Oonagh Williams

British born Chef Oonagh Williams holds a culinary arts degree and spends her time cooking, writing, speaking, and educating the public on gluten-free and allergy-free diets. She herself has celiac disease along with other food allergies. When not writing or speaking nationally on food, she teaches cooking classes, hosts dinner parties, and offers one-on-one help. Locally, she teaches healthier food cooking classes including vegetarian cooking for everyone, as most real food is naturally gluten-free and free of many other allergens. Chef Oonagh had the honor of being a speaker at the Boston Celiac Symposium, alongside top doctors from Beth Israel, Mass General, and Harvard Medical School.


Buy herDelicious Gluten-Free Cooking e-book, over 200 pages, full color photos, only $20;

like her Facebook page, Gluten-Free Cooking with Oonagh, where she posts recipes, links to her appearances, and gluten-free products she’s discovered; and connect with her on Skype for help in following a food allergy diet.

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FDA Fast Tracks Celiac Disease Vaccine

A vaccine being studied to treat celiac disease has received fast-track designation from the U.S. Food and Drug Administration.

The designation is designed to speed the development and review process for drugs that have the potential to fulfill unmet needs of patients with serious or life-threatening conditions.


READ MORE

At-Home Test for Monitoring Celiac Disease Launches

An at-home test for celiac disease can now also be used by patients to monitor how well they are doing on the gluten-free diet after diagnosis.


READ MORE


Allergic Living: Gluten-Free Triple Chocolate Cherry Pie

By Laurie Sadowski

This six-ingredient dessert takes only about 30 minutes to prepare. It features over a pound of chocolate, juicy cherries, and a crust with a crunch – all nestled into a no-bake pie.


READ MORE on
Allergic Living.

Photo credit: Allergic Living

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The Perfect Match Campaign!

This February, make a difference and help accelerate research for celiac disease treatments and a cure by donating to Beyond Celiac. We’re raising funds to help pay for new research grants in the celiac disease field. Donations made to this month will be tripled by a board member, up to $20,000 ! Make your gift go three times further with the perfect match.


DONATE NOW

Start a Facebook Fundraiser for Beyond Celiac

Happy birthmonth to all our February-born followers! When your big day rolls around, consider “donating” it to Beyond Celiac so that we can help fund new research scientists in the celiac disease field!


START YOUR FACEBOOK FUNDRAISER HERE

Our Latest Facebook Video

Beyond Celiac director of communications, Claire Baker, tries out the imaware at-home celiac disease monitoring kit.


WATCH THE RECORDING

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