Beyond Celiac Awards Nearly $450,000 in Research Grants for Groundbreaking Studies on Celiac Disease
PHILADELPHIA (Aug. 13, 2019) Beyond Celiac, the leading research-driven celiac disease organization working to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure, has awarded close to $450,000 to two scientists conducting groundbreaking celiac disease studies. One study is aimed at killer cells that cause the actual intestinal tissue damage in celiac disease and the other is researching a more exact way to measure intestinal damage revealed in a biopsy. In addition, Beyond Celiac awarded an Early Career grant of $150,000 earlier this year, bringing the total invested in research to nearly $600,000 in 2019. Overall, Beyond Celiac gave top priority in awarding these two newest 2019 grants to research investigating the role of T-cells in driving the immune response in celiac disease. White blood cells that function as the body’s disease-fighting soldiers, T-Cells are improperly activated by gluten in those who have celiac disease. “The scientific world is looking at celiac disease as part of the broader autoimmune disease spectrum, and progress is being made as a result. At Beyond Celiac, we remain committed to our mission of advancing research with an international scope and supporting scientists who study immunological diseases,” said Alice Bast, CEO of Beyond Celiac. Established Career Award Paul Klenerman, PhD, a professor of gastroenterology at the University of Oxford, Oxford, England, and an immunologist who has done extensive work in Hepatitis C and HIV, has received the Established Investigator Award, a grant of up to $100,000 for each of three years. The award places emphasis on immunology and is designed to support novel approaches to understanding celiac disease. It also encourages scientists working in another related field, like Klenerman, to turn their attention to celiac disease. Klenerman’s research will focus on T-cells in the inner gut lining – killer CD8 T-cells. Currently, it’s known that a particular type of CD8 T-cell is abundant in the gut of celiac disease patients even when they are on the gluten-free diet. “These cells have features which suggest they are responding to a particular, unknown signal, and acting to cause inflammation, potentially driving celiac disease,” Klenerman explained. “We do not yet fully know what activates them, how they cause damage and how they can be regulated.” His work will attempt to answer these questions and look more closely at a new cell type that is driving inflammation and tissue damage in celiac disease. Klenerman plans to explore the cells’ role in celiac disease and what triggers them, which may directly lead to improved tests and treatments. Pilot and Feasibility Award The Pilot and Feasibility Award, which is given to help scientists collect the preliminary data needed to begin answering major questions about celiac disease, has been awarded to Jocelyn Silvester, MD, director of research at the Celiac Disease Program at Children’s Hospital, Boston.  Silvester will receive a grant of up to $80,000 for each of two years. Preliminary data show that transcriptomics – the study of all ribonucleic acid (RNA) molecules within a cell - of intestinal biopsies can identify genes that correlate to inflammation caused by gluten. This type of early phase of study could lead to breakthroughs for larger scale research or clinical trials. “When Beyond Celiac formed its Scientific Advisory Council earlier this year, one goal was to give vigorous review to the grant applications we receive,” said Marie Robert, MD, chief scientific officer of Beyond Celiac and the only CSO of a celiac disease patient advocacy group in the United States. “We achieved that goal through the selection of top notch research by top notch scientists.”
About Beyond Celiac For more than 15 years, Beyond Celiac has been the leading patient advocate and research-driven celiac disease organization working to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure. By engaging with the top scientists in the field, awarding research grants, and supporting the community, Beyond Celiac envisions a world in which people with celiac disease can live healthy lives and eat without fear – a world Beyond Celiac.
Media Contact: Nicole Hunnicutt, 404.558.4108 [email protected] Claire Baker, 267.419.2111 [email protected]    
Beyond Celiac Launches First-of-Its-Kind App for Patient Engagement in Celiac Disease Research

Media Contact: Nicole Hunnicutt, 404.558.4108 [email protected]

Claire Baker, 267.419.2111 [email protected]

    Beyond Celiac Launches First-of-Its-Kind App for Patient Engagement in Celiac Disease Research The Go Beyond Celiac app enables people with celiac disease to easily convey their journey before, during and after diagnosis, get resources, and see how their experience compares to others PHILADELPHIA (August 6, 2019) Beyond Celiac, the leading celiac disease organization working to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure, has launched a first-of-its-kind mobile app to complement its online research database, Go Beyond Celiac, providing more convenience and opportunity for patient engagement. Go Beyond Celiac, which has enrolled thousands of members since its launch in 2017, is an online database created by people with celiac disease, for people with celiac disease. Users can participate in research by sharing their stories and experiences and learn how to become involved in celiac disease research studies. The new app now makes Go Beyond Celiac more interactive and engaging, and the mobile convenience encourages more people to visit and share their experience of living with and managing celiac disease. This is done through surveys that can be filled out at users’ convenience. The app also offers helpful insights about events, educational opportunities and more. Go Beyond Celiac members will be able to see how they compare to others as a more complete picture of celiac disease emerges from the data collected.

“Understanding how people have been impacted by celiac disease is some of the most important information researchers and doctors need in order to accelerate celiac disease research,” said Alice Bast, CEO of Beyond Celiac. “Go Beyond Celiac provides us with the ability to tell them what life is like before, during and after our diagnosis.”

In addition to driving research that leads to a better understanding of how celiac disease develops, the Go Beyond Celiac online tool provides opportunities to increase timely diagnosis and improve the diagnosis experience, inform research about the burden of living with celiac disease, accelerate the development of treatment alternatives to the gluten-free diet and ultimately help find a cure. “While awareness of celiac disease is higher than ever, people living with this genetic autoimmune condition struggle to be taken seriously. At Beyond Celiac, we are working to address this need. We are a bridge between the community and the researchers who are focused on finding answers to our challenges,” added Bast. The Go Beyond Celiac app is available for both iOS and Android devices.
About Beyond Celiac For more than 15 years, Beyond Celiac has been the leading patient advocate and research-driven celiac disease organization working to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure. By engaging with the top scientists in the field, awarding research grants, and supporting the community, Beyond Celiac envisions a world in which people with celiac disease can live healthy lives and eat without fear – a world Beyond Celiac.  
Five Reasons to Pay Attention to the 2019 Beyond Celiac Research Symposium
PHILADELPHIA (April 1, 2019) – When Beyond Celiac hosts its third annual Research Symposium on May 30, 2019, in Philadelphia, three leading experts led by Beyond Celiac CSO and moderator Marie Robert, MD will share the latest news on celiac disease, a serious genetic autoimmune disease that damages the small intestine when gluten is ingested. The Symposium is presented by Beyond Celiac as part of its mission to advance research to find treatment options and, eventually, a cure for celiac disease, which affects one in 133 Americans. There are many reasons to attend or tune in to the Symposium’s live webcast, but here are the top five:
  1. Gain a better understanding of non-celiac gluten sensitivity, how it differs from celiac disease, and the steps to a proper diagnosis from Sonia Kupfer, MD, of the University of Chicago.
  2. Get the latest on celiac disease research breakthroughs. Joseph Murray, MD, of the Mayo Clinic will be discussing this and other developments for future treatment for celiac disease in addition to the gluten-free diet.
  3. What celiac disease patients want their treatments to look like should matter. That’s the focus of Pfizer’s Linda Deal, MS, who will discuss the importance of patient engagement in the drug development process, including how clinical trials should be designed with outcomes important to patients in mind.
  4. Stay informed. May is Celiac Awareness Month and an opportunity to learn more about this disease. Beyond Celiac reports that 83% of Americans with celiac disease are undiagnosed or misdiagnosed with other conditions. Celiac disease can also lead to a number of other disorders including infertility, reduced bone density, neurological disorders, some cancers, and other autoimmune diseases.
  5. Understand how better diagnosis, advanced research and accelerated discovery of new treatments and a cure will help those affected by celiac disease as well as other autoimmune disorders. It’s estimated that 50 million Americans are living with autoimmune disease. Ongoing research has the potential to unlock the mystery of celiac disease and autoimmune diseases in general.
  About Beyond Celiac For more than 15 years, Beyond Celiac has been the leading patient advocate and research-driven celiac disease organization working to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure. By engaging with the top scientists in the field, awarding research grants, and supporting the community, Beyond Celiac envisions a world in which people with celiac disease can live healthy lives and eat without fear – a world Beyond Celiac.  www.BeyondCeliac.org.
Beyond Celiac partners with imaware™ to expand use of at-home celiac disease testing for faster medical diagnosis
Innovative approach to celiac disease testing could improve the incredibly low diagnosis rate of this serious genetic autoimmune disease. Philadelphia, PA, Feb 12, 2019 Beyond Celiac today announced their newest partner, imaware™.  imaware™ is a unique at-home celiac disease screening and monitoring test that is highly accurate and provides actionable results for patients. Beyond Celiac is partnering with imaware™ to support the ambitious goal of dramatically reducing the number of individuals dealing with undiagnosed celiac disease by helping them more quickly take the steps needed for diagnosis. “Celiac disease has long been plagued by low diagnosis rates. It is estimated that less than 20 percent of patients who have the condition know it,” noted Alice Bast, Beyond Celiac CEO. “We hear from our community that their doctors do not want to test them despite symptoms. The average delay in diagnosis is 6 to 10 years. It took me eight years to get diagnosed,” she added. A study published recently in the United European Gastroenterology Journal concluded that patients whose diagnosis had been delayed for three years reported being sick more often, going to the doctor more frequently and using more drugs for indigestion and depression than those who were diagnosed more quickly. “We believe that the imaware™ at-home celiac disease test will help reduce the number of undiagnosed people with celiac disease,” said Jani Tuomi, Chief Product Officer for imaware™. “An easy to use test, with easy to read results that are reviewed by a doctor, will dramatically reduce time to diagnosis. With a partner like Beyond Celiac, we will be able to better engage with the patient community to educate, screen, and ultimately help patients engage their doctors sooner for diagnosis.” The imaware™ test measures the same antibodies to gluten as the tests that doctors use in their offices as the first step to diagnose celiac disease – anti-tissue transglutaminase (tTG) and deaminated gliadin peptide (DGP) tests. In the United States, definitive diagnosis of celiac disease requires a biopsy that shows intestinal damage in addition to the blood test. Sold online only, the imaware™ test requires a finger prick and collection of a small amount of blood in a vial. Consumers then mail their sample back and receive their confidential test results via a secure portal in about a week. For results to be accurate, consumers need to be on a normal gluten-containing diet. The imaware™ at-home test for celiac disease is available at imaware.health for $165.00. Beyond Celiac will receive a portion of sales to support their ongoing initiatives to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure.   About Celiac Disease Celiac disease is a serious, genetic, autoimmune disorder that affects an estimated 1 in 100 Americans, the vast majority of whom are still undiagnosed. The disease causes debilitating symptoms, and if left untreated, can lead to serious long-term health problems including infertility and some types of cancer.   About Beyond Celiac: A 501(c)(3) non-profit organization, Beyond Celiac envisions a world in which people with celiac disease can live healthy lives free from social stigma and fear of gluten exposure – A world Beyond Celiac. Contact: Claire Baker Beyond Celiac [email protected] 215-325-1306 ext. 111
Renowned opera tenor Arturo Chacón-Cruz joins with Beyond Celiac to raise awareness and support for celiac disease
For the opera star, finding a cure for celiac disease is a personal crusade Philadelphia, PA, Feb 21, 2019 Beyond Celiac has announced their partnership with opera tenor Arturo Chacón-Cruz to raise awareness of this serious genetic autoimmune condition and to generate support for research for treatments and a cure. Chacón-Cruz and his young son have both 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. “It has been delightful getting to know Arturo and his family. His positive spirit is infectious, and his talent and charms are undeniable,” notes Alice Bast, Beyond Celiac CEO. “As our spokesman, he will bring the same intention and intensity he brings to the stage to raising awareness of celiac disease and the need for research funding,” she continued. Chacón-Cruz is featured in a video describing the challenges of living with celiac disease and his decision to support Beyond Celiac. “We need to raise awareness about celiac disease itself, but also about the possibility of a cure. I’m doing this for my 7-year-old son. Personally, I know what the struggle with this disease is like. I know what he’s going through,” said Chacón-Cruz. “Beyond Celiac has an innovative and aggressive approach to driving research. They have the right people, focused on the right things, with the rightresources,” he continued. The Beyond Celiac science plan is outlined in greater detail at www.beyondceliac.org/scienceplan A native of Sonora, Mexico, Chacón-Cruz has performed over 50 roles such as Cavaradossi in Tosca, in cities across the globe – Rome, Berlin, Munich, Moscow, London – and notably, at La Scala in Milan and Carnegie Hall in New York City. An acclaimed performer, Chacón-Cruz has a wide repertoire and has won a number of honors and awards. He shares a long and important relationship with two of the reigning opera singers of our day, Plácido Domingo and Ramón Vargas. Since discovering Chacón-Cruz in 2000, Plácido Domingo has remained Chacón-Cruz’s friend and mentor, and the two have shared the operatic stage and concert platform many times. Chacón-Cruz’s first ever Mariachi recording “de México para el Mundo” was released In December 2018, distributed by Sony and available on all digital platforms. He will be performing in May in the Los Angeles Opera production of El Gato Montés. XXX About Celiac Disease Celiac disease is a serious, genetic, autoimmune disorder that affects an estimated 1 in 133 Americans, 83% of whom are still undiagnosed. The disease causes debilitating symptoms, and if left untreated, can lead to serious long-term health problems including infertility and some types of cancer. According to the nonprofit organization Asistencia al Celíaco de México, the prevalence of celiac disease in Mexico is approximately 1 per 150 people. Researchers estimate that 800,000 Mexicans have it, though as in the United States, the diagnosis rate is low. Prevalence of celiac disease in all of Latin America is reported to be similar to that reported in Europeans, which researchers estimate to be 1%. Beyond Celiac: A 501(c)(3) non-profit organization, Beyond Celiac envisions a world in which people with celiac disease can live healthy lives free from social stigma and fear of gluten exposure – A world Beyond Celiac. Contact: Claire Baker Beyond Celiac [email protected] 267-419-2111
Beyond Celiac Webcast Welcomes a Global Audience
October Research Symposium to Present the Latest on the Microbiome, Immune System and Celiac Disease Research News to Viewers Around the World Philadelphia, PA, Sep 06, 2018 - Celiac disease and other autoimmune disease sufferers around the world can learn the latest developments in research and treatment by tuning in to a live webcast of the Second Annual Beyond Celiac Research Symposium, Wednesday, Oct. 10, 2018, 6:00-7:30 p.m. Leading celiac disease experts will explore the headline-making topic of the role of the immune system – the body’s defense mechanism – in celiac disease, the groundbreaking research into the gut microbiome, and breakthroughs in clinical trials. These experts will also answer questions submitted in advance from webcast viewers and live from the audience. Worldwide, approximately one in 100 people — about one percent — have celiac disease, a serious genetic autoimmune disease that damages the small intestine when gluten is ingested. Beyond Celiac reports that 83% of Americans with celiac disease are undiagnosed or misdiagnosed with other conditions. Additionally, it’s estimated that 50 million Americans are living with autoimmune disease. Currently no pharmaceutical treatments or cures for celiac disease exist, but ongoing research has the potential to unlock the mystery of celiac disease and autoimmune diseases in general. The Beyond Celiac Research Symposium panel includes: Moderator:
  • Marie Robert, MD, Chief Scientific Officer at Beyond Celiac and Professor of Pathology and Medicine at Yale School of Medicine. Dr. Robert is a nationally recognized gastrointestinal surgical pathologist, a celiac disease researcher, and has served as the director of Yale’s Program in Gastrointestinal Pathology and the Yale Fellowship in Gastrointestinal Pathology.
Panelists:
  • Ciaran Kelly, MDProfessor of Medicine at Harvard Medical School and Director of Gastroenterology Training at Beth Israel Deaconess Medical Center. He is an internationally recognized expert in the diagnosis and management of celiac disease and a member of the Beyond Celiac Board of Directors.
  • Maureen M. Leonard, MD, MMSc, Clinical Director of the Center for Celiac Research and Treatment at MassGeneral Hospital for Children and Instructor of Pediatrics at Harvard Medical School. She is part of a groundbreaking study of how the microbiomes of infants who have relatives with celiac disease contribute to celiac disease development.
  • Stephen D Miller, PhDinternationally recognized researcher on pathogenesis and regulation of autoimmune disease, and Professor of Microbiology-Immunology at Northwestern University’s Feinberg School of Medicine. His research into nanoparticles engineered for immune regulation are on the leading edge of innovations for the future of celiac disease management.
Media access to the live event can be arranged through Claire Baker, Beyond Celiac Director of Communications. The webcast is free, but registration is required. Visit www.BeyondCeliac.org/2018-celiac-research-symposium to register. Contact: Claire Baker Beyond Celiac [email protected] 215-325-1306 ext. 111
Organization announces Early Career Research Award in the field of celiac disease

Organization announces Early Career Research Award in the field of celiac disease

10/18/2018

October 18, 2018 – [Philadelphia] – Beyond Celiac is announcing the creation of the Society for the Study of Celiac Disease - Beyond Celiac Early Career Research Award, a joint venture to attract exceptionally promising early career academic investigators to the field of celiac disease research. The award will provide a clear and bold opportunity to expand the scope of research in this field that, to date, has been underfunded and underexplored. Beyond Celiac is funding this two-year grant, and SSCD is managing the grant application and research program.

The award aims to correct a significant gap in the gastrointestinal and autoimmune disease research portfolio. Celiac disease consistently received the lowest amount of federal research funding over a five-year period compared to other gastrointestinal conditions, as noted in a review published as a commentary in the journal Gastroenterology by Emma Clerx, Sonia Kupfer and Daniel A. Leffler. In general, NIH support is seen as essential for improving the understanding of health and disease. Key reasons for the disparity in NIH funding include a lack of investigators in the field – precisely because of historically poor funding – and the sometimes narrow expertise of peer review panels on NIH review committees. This SSCD-Beyond Celiac award is targeted to address this gap.

“This partnership is natural fit for our organizations. We at Beyond Celiac recognize that advancing science by creating incentives for those early in their careers is playing the ‘long game,’ but one that will ultimately get us across the goal to find treatments beyond the gluten-free diet, and hopefully, a cure,” noted Beyond Celiac Chief Scientific Officer Marie Robert, MD.

“The support of Beyond Celiac for this important grant encourages and facilitates the research initiatives of an early career investigator in the field of celiac disease. The project will comprise basic, clinical, translational, behavioral, or epidemiological research in celiac disease,” said Elena Verdú, MD, PhD, SSCD President.

“Our community is living with the burden of this disease every day. We live in fear of food. The gluten-free diet is not enough. The need for research funding is now. While we hope the NIH will increase its investment, we are doing what we’ve always done – helping our community live life to the fullest and fighting for people with celiac disease through any means necessary,” Alice Bast, CEO of Beyond Celiac added.

Those interested in applying for this important grant can learn more by visiting www.theceliacsociety.org/celiac_research.

About Beyond Celiac

Beyond Celiac unites with patients and partners to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure.

A 501(c)(3) non-profit organization, Beyond Celiac envisions a world in which people with celiac disease can live healthy lives free from social stigma and fear of gluten exposure – A world Beyond Celiac. For more information, contact Claire Baker: [email protected] or (215) 325-1306, ext. 111.

Beyond Celiac celebrates Celiac Awareness Month with launch of new “Monster” video, sharable content

Beyond Celiac celebrates Celiac Awareness Month with launch of new “Monster” video, sharable content

5/1/2018

Ambler, PA – April 30, 2018 – May is Celiac Awareness Month, and Beyond Celiac is commemorating it with a month-long campaign: #ItsTimetoCeliACT. The organization has created sharable content that will enable those diagnosed with celiac disease to be actively involved in raising awareness about this serious genetic autoimmune disease that affects an estimated 3 million Americans. The community will be invited to share, shop, support, and add their voice to drive research for treatments and a cure.

New content includes:

  • Celiac Disease is a Monster video: This fast-paced and edgy animated video succinctly conveys the seriousness of celiac disease. Produced by Crosby Marketing Communications, the video captures the urgency and importance of patient-participation in research for treatments and a cure.
  • Infographics, buttons, icons and more: The Celiac Awareness Month site at Beyond Celiac has loads of sharable content made easy.

“May and celiac disease awareness month gives us a great platform to increase engagement,” said Alice Bast, Beyond Celiac CEO. “Our community has demonstrated that when we speak up, we can be heard. The gluten-free diet has overshadowed the seriousness of celiac disease. We need more and we need better. When we all pull together, we can increase awareness about celiac disease and its challenges, that accurate diagnosis is vital and that we can drive research for treatments and a cure.”

Other Celiac Awareness Month Happenings:

Party City Celiac Disease Research Fundraising Campaign: This past January, Party City aired an insensitive commercial which poorly portrayed celiac disease and the gluten-free diet. After the celiac disease community erupted on social media, Party City acted quickly to discontinue the ad and to apologize. The party goods retailer also took the extra step to learn more about celiac disease and made donations to support celiac disease research. Now, they're taking it a step further during Celiac Awareness Month with a register donation drive, the first national campaign of its type to support celiac disease research. Those shopping at Party City in May will be asked if they’d like to donate $1, $3 or $5 at checkout to support the cause.

Greater Philly Gluten-Free Expo: Beyond Celiac is a sponsor of the 3rd Annual Greater Philly Gluten-Free Expo. 90+ local and national vendors will be on hand, with seminars, door prizes, samples, products for purchase and more. Admission for youth 12 and under is free with adult.

XXX

About Celiac Disease
Celiac disease is a serious, genetic, autoimmune disorder that affects an estimated 1 in 133 Americans, 83% of whom are still undiagnosed. The disease causes debilitating symptoms, and if left untreated, can lead to serious long-term health problems including infertility and some types of cancer.

Beyond Celiac:

A 501(c)(3) non-profit organization, Beyond Celiac envisions a world in which people with celiac disease can live healthy lives free from social stigma and fear of gluten exposure – A world Beyond Celiac.

Beyond Celiac unites with patients and partners to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure.

Media Contact:

Claire Baker, Beyond Celiac, 267-419-2111, [email protected]

Kim Pacini, Beyond Celiac, 267-419-2103, [email protected]

Beyond Celiac Hiring Chief Scientific Officer Marie Robert, MD

Beyond Celiac Hiring Chief Scientific Officer Marie Robert, MD

2/6/2018

PHILADELPHIA (February 5, 2018) – Beyond Celiac has announced the hiring of Marie Robert, M.D. as Chief Scientific Officer. Dr. Robert will lead the development and implementation of a transformational patient-centered research agenda focused on accelerating solutions toward new pharmaceutical treatments and a cure for celiac disease. She will develop and establish research and funding priorities and will translate the Beyond Celiac Research Consortium findings to impact patients in areas including clinical decision-making about diagnosis, disease management, treatment, and eventually a cure.

“Beyond Celiac is uniquely positioned to engage patients and scientific partners in a synergistic effort to further clinical, basic and translational research on celiac disease. I am eager to work with this extraordinary organization to realize that vision,” notes Dr. Robert.

Professor of Pathology and Medicine at Yale University School of Medicine, Dr. Robert is a nationally recognized gastrointestinal, liver, and pancreatic surgical pathologist with 25 years of experience in clinical diagnosis, teaching, and collaborative scientific endeavors across a wide spectrum of diseases. Specific areas of expertise include inflammatory and neoplastic conditions of the gastrointestinal tract. Dr. Robert has served as the Director of the Program in Gastrointestinal Pathology and Director of the Fellowship in Gastrointestinal Pathology at Yale University. She is an author of guidelines in the practice of gastrointestinal pathology diagnosis (American Gastroenterology Association, North American Society for the Study of Celiac Disease and Rodger Haggitt Gastrointestinal Pathology Society). She has served on numerous national boards and committees and is a past president of the Rodger Haggitt Gastrointestinal Pathology Society.

Dr. Robert has studied celiac disease throughout her career. During residency at UCLA she performed a study of the biopsy findings in refractory celiac patients, in which collagenous sprue was identified as a common histologic change. Additional work on celiac disease includes contributions on inflammatory conditions of the small intestine in the Odze, Goldblum and Crawford (eds) textbook “Surgical Pathology of the Gastrointestinal Tract, Liver, Biliary Tract and Pancreas,” considered the definitive text in gastrointestinal surgical pathology worldwide. She is the lead author of an upcoming best practices statement on the use of duodenal biopsy in the diagnosis of celiac disease, as well as a study on diagnostic approaches to refractory celiac disease. Dr. Robert is frequently invited to speak on celiac disease nationally and internationally. She is slated to begin her official duties with Beyond Celiac in April 2018 and will also continue in her role at Yale.

“Investing in our scientific expertise will enable Beyond Celiac to directly impact the direction and focus of celiac disease research, amplifying the patient’s voice as we look for much-needed answers for this burdensome disease,” adds Alice Bast, Beyond Celiac CEO. “As a non-profit advocacy organization, we are launching this patient-driven science model, proven in other areas such as cystic fibrosis, to further our mission of uniting patients and partners to drive diagnosis, advance research, and accelerate the discovery of new treatments and a cure for this serious, genetic autoimmune disease.”

In addition to the recruitment of Dr. Robert, Beyond Celiac has retained consultant Marla Gold, MD, FACP. With an extensive background in research strategy and public health, Dr. Gold will support research collaborations, corporate programs and the development of the Go Beyond Celiac patient registry. Dr. Gold is currently Dean Emerita and Professor of Health Management and Policy with the Dornsife School of Public Health at Drexel University. An infectious disease specialist, she has long served on the Beyond Celiac Scientific/Medical Advisory Council and has a personal interest in the organization’s mission because celiac disease affects her immediate family.

The Beyond Celiac science team also includes Kate Avery, MPH, Director of Research and Patient Engagement. Avery earned her MPH in Health Behavior at University of North Carolina at Chapel Hill. Avery has been leading the development, launch, enrollment and patient engagement for the Beyond Celiac interactive digital community and patient registry, Go Beyond Celiac , since March 2017. She previously published on the topic of patient perspectives in disease management.

Also a member of the Science Department is Medical and Science News Analyst Amy Ratner. Through her reporting, Ratner curates the latest in celiac disease research and shares it in patient – and community – friendly language.

Beyond Celiac has worked with experts in the field of celiac disease through its Scientific/Medical Advisory Council since its founding. Established in 2003, the Beyond Celiac Scientific/Medical Advisory Council has played an integral role in establishing and maintaining evidence-based standards for the organization and represents the very best in scientific and medical practice. Dr. Robert will work closely with the established Council and strengthen ties between staff and our external advisors.

Media Contact:
Claire Baker, Director of Communications and New Media
Beyond Celiac
267-419-2111
[email protected]

Beyond Celiac Announces Addition of New Board Members

Beyond Celiac Announces Addition of New Board Members

1/29/2018

Philadelphia, PA, Jan. 25, 2018 -- Beyond Celiac, a leading patient advocacy organization serving the 2.5 million Americans with celiac disease, announced the addition of two new members to its Board of Directors. These board members will help further the organization’s mission of uniting with patients and partners to drive diagnosis, advance research, and accelerate the discovery of new treatments and a cure for this serious, genetic autoimmune disease.

Chad P. Shaffer, MD, FAAFP, Assistant Professor of Medicine, Retired, University of Missouri-Kansas City School of Medicine.Dr. Shaffer was a practicing family physician with more than 25 years’ experience until becoming ill with refractory celiac disease. In addition to bringing extensive medical experience and a first-hand patient perspective to this board position, Dr. Shaffer participated in the groundbreaking Beyond Celiac 2015 Research Summit and served as a co-chair of the very successful inaugural Step Beyond Celiac Kansas City 5K and Auto Show, raising $60,000 for Beyond Celiac in 2017. Dr. Shaffer joins the Beyond Celiac Board from Overland Park, KS.

Jennifer Platzkere Snyder, Partner, Dilworth Paxson LLP.Ms. Snyder represents employers in addressing all aspects of labor and employment law, including employment discrimination litigation, wage and hour compliance, restrictive covenants and trade secrets, and traditional labor-management relations. In 2017, Ms. Snyder was inducted into the College of Labor and Employment Lawyers, and she currently serves as the Employer Co-Chair of the American Bar Association’s Committee on Practice and Procedure under the National Labor Relations Act. A graduate of the Wharton School of Business and Villanova University School of Law, Ms. Snyder lives with her husband and three children in Bala Cynwyd, PA. In addition to her business and legal expertise, Ms. Snyder joins the board with a personal family connection to celiac disease, gluten sensitivity, as well as a variety of other related conditions.

“We are proud to add these respected professionals to our leadership team. Their support and participation will help us advance celiac disease awareness, diagnosis and treatments,” noted Alice Bast, Beyond Celiac CEO.

Alan M. Ehrlich, MD , Executive Deputy Editor, DynaMedand Assistant Professor of Family Medicine, University of Massachusetts Medical School. Dr. Ehrlich joined the Beyond Celiac Board of Directors in 2016 and assumed the role of Board Chair in November 2017. Dr. Ehrlich brings personal knowledge of celiac disease to this position. He joins the Board from Westborough, MA.

About Beyond Celiac
Beyond Celiac, a 501 (c)(3) non-profit organization formerly known as the National Foundation for Celiac Awareness, is advancing research for treatments in addition to the gluten-free diet, which is difficult to manage and often incomplete and insufficient. In 2017, Beyond Celiac launched Go Beyond Celiac, an online patient platform and registry designed to bring patients and scientists together to speed research. For more information, please visit www.beyondceliac.org.

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