Beyond Celiac

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Beyond Celiac
MottoUnite with patients and partners to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure for celiac disease.
Formation2003; 21 years ago (2003)
FounderAlice Bast
TypeNon-profit Organization
Legal status501(c)(3) Non-profit
Location
  • Ambler, PA, U.S.A.
Region
United States
Key people
  • Alice Bast (Chief Executive Officer)
  • Ed Snider (Former Board Member)
Websitewww.beyondceliac.org

Beyond Celiac, formerly known as The National Foundation for Celiac Awareness, founded in 2003, is a patient advocacy and research-driven non-profit organization dedicated to increasing diagnosis, advancing research and accelerating the discovery of new treatments and a cure for celiac disease.[1] The organization, based in Ambler, Pennsylvania, outside of Philadelphia, asserts that treatment options and ultimately curing celiac disease will advance research for other autoimmune diseases as well.

The organization was founded by Alice Bast,[2] the 2010 recipient of the Philadelphia Award,[3][4] along with a generous first donation from Ed Snider, the founder of the Philadelphia Flyers, chairman of Comcast-Spectacor. Ed Snider, who was diagnosed with celiac disease, was also a former member of the Beyond Celiac Board of Directors[5] and continued to support the Foundation until his death in 2016.[6][7]

Beyond Celiac is a charitable organization with tax-exempt status granted under Section 501(c)(3)[8] of the Internal Revenue Code. The Foundation is highly rated by Charity Navigator.[9]

Research

Beyond Celiac received a grant from the Food and Drug Administration (FDA) in 2011 as part of its Safe Use Initiative to launch a study qualifying the extent of gluten exposure in those with celiac disease from medications.[10]

In 2019, Beyond Celiac launched a strategic science plan to create pathways to treatments and cure for celiac disease. Their science plan laid out a four-part approach to advancing celiac disease science, which included creating a patient database and registry called Go Beyond Celiac,[11] hiring a chief scientific officer, assembling a scientific advisory council and directly funding research through a grants program.

In the summer of 2019, Beyond Celiac has awarded close to $450,000 to two scientists conducting celiac disease research studies.[12] Earlier that year, they awarded an Early Career grant of $150,000 along with the Society for the Study of Celiac Disease,[13] bringing the total invested in research by Beyond Celiac 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.

Beyond Celiac also assists pharmaceutical companies in recruiting for clinical trials related to celiac disease.[14]

In 2020, Beyond Celiac conducted research was presented at Digestive Disease Week (DDW) and was available in the May 2020 online supplement of the medical journal Gastroenterology.[15] The research centered around a 4,500 person celiac disease community survey which detailed the patient's thoughts on and willingness to participate in clinical trials. It concluded that a majority of the patient population was willing to participate in clinical trials but are more hesitant about the gluten consumption and biopsies that are sometimes required during a trial.[16]

Education and Awareness

Beyond Celiac publishes a monthly online and e-newsletter, to keep the celiac disease community updated on celiac disease research, the organization's advocacy efforts and other important news items. The Foundation also hosts a regular podcast, Celiac Straight Talk, a regular series that spreads awareness and discusses life with celiac disease, research and more.[17] The Beyond Celiac website includes a host of guides and helpful information for those looking into the celiac disease testing process as well as navigating life on the gluten-free diet.

In 2006, former CNN news anchor Heidi Collins became the official spokesperson of the Foundation.[18] Her goal by partnering with Beyond Celiac (then known as the National Foundation for Celiac Awareness) was to help reduce the time to diagnosis, help spread awareness for more accurate diagnosis and to empower patients.

Also in 2012, the Foundation worked with Domino's Pizza to create a gluten-free pizza crust.[19] This led to some controversy within the celiac disease community when the pizzas were declared still unsafe for those with celiac disease due to cross-contact concerns.[20] It was seen as a misstep in addressing the entire gluten-free and celiac disease communities.[21]

New York City chef and restaurateur, Jehangir Mehta, partnered with the Foundation in 2013 to help them launch their GREAT Kitchens program's Gluten-Free Chef's Table Tour. The aim of the program was to help educate chefs about the gluten-free diet, how to safely prepare gluten-free meals and the need for gluten-free menu items.[22]

In 2018, Beyond Celiac partnered with Mexican American operatic tenor Arturo Chacón Cruz,[23] who was diagnosed with celiac disease, to help spread awareness of celiac disease and raise funds for research. Since 2018, Chacón Cruz has served as an ambassador for the Foundation and performed at their 2019 gala.[24]

References

  1. ↑ https://www.phillyvoice.com/celiac-disease-vaccine-nexvax2-beyond-celiac/
  2. ↑ "3 Cheers: Meet The Montgomery County Woman Who's Trailblazing Moves Beyond Celiac". November 14, 2019.
  3. ↑ "alice-bast – The Philadelphia Award".
  4. ↑ Writer, By Dianna Marder, Inquirer Staff. "Alice Salomon Bast wins Philadelphia Award for celiac work". www.inquirer.com.{{cite web}}: CS1 maint: multiple names: authors list (link)
  5. ↑ "Reflecting on Ed Snider's health & fitness legacy". 6abc Philadelphia. April 12, 2016.
  6. ↑ ProPublica, Mike Tigas, Sisi Wei, Ken Schwencke, Brandon Roberts, Alec Glassford. "NATIONAL FOUNDATION FOR CELIAC AWARENESS - Form Form 990-EZ for period ending Oct 2003 - Nonprofit Explorer". ProPublica.{{cite web}}: CS1 maint: multiple names: authors list (link)
  7. ↑ https://blogs.jefferson.edu/atjeff/2016/04/23/in-the-news-ed-sniders-impact-on-celiac-disease-awareness/
  8. ↑ "Beyond Celiac - GuideStar Profile". www.guidestar.org.
  9. ↑ "Charity Navigator - Rating for Beyond Celiac". Charity Navigator.
  10. ↑ "Gluten in Medications Research Report | BeyondCeliac.org". Beyond Celiac.
  11. ↑ Inquirer, Alice Bast, For The. "Patient voices should drive celiac disease treatments beyond the gluten-free diet | Opinion". www.inquirer.com.{{cite web}}: CS1 maint: multiple names: authors list (link)
  12. ↑ "Beyond Celiac awards nearly $450,000 in research grants". www.healio.com.
  13. ↑ https://www.theceliacsociety.org/celiac_research
  14. ↑ "Phase 2 Clinical Trial for Celiac Drug Candidate is Recruiting Participants | BeyondCeliac.org". Beyond Celiac.
  15. ↑ https://www.gastrojournal.org/article/S0016-5085(20)33724-0/fulltext
  16. ↑ https://ddw.apprisor.org/epsAbstractDDW.cfm?id=1
  17. ↑ "Celiac Straight Talk". www.stitcher.com.
  18. ↑ "CNN Newsroom Anchor Heidi Collins to be Official Spokesperson for the National Foundation for Celiac Awareness | BeyondCeliac.org". Beyond Celiac.
  19. ↑ "Domino's new gluten-free pizza crust not recommended for people with celiac disease". www.cbsnews.com.
  20. ↑ https://www.everydayhealth.com/digestive-health/0508/dominos-new-gluten-free-pizza-not-for-celiacs.aspx
  21. ↑ https://www.allergyeats.com/dominos-pleases-then-teases-the-gluten-free-community/
  22. ↑ Desk, BWW News. "'Next Iron Chef' Finalist and New York City Restaurateur Jehangir Mehta to Embark on the GREAT Kitchens 10-City Gluten-Free Chef's Table Tour". BroadwayWorld.com.
  23. ↑ S, Michael. "Celebrate the Arts with Beyond Celiac".
  24. ↑ "Beyond Celiac". phillystylemag.com.

External links

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