We are proud to introduce our Patient and Family Advisory Board (PFAB)!
As either a patient of celiac disease, or caregiver of someone with celiac disease, a Patient and Family Advisory Board (PFAB) member will provide first-hand insight to inform and enrich the research and development of a treatment or cure for celiac disease. The PFAB will help sponsors and industry partners with strategic planning for their initiatives in support of this goal.
As a member of the Beyond Celiac PFAB, we help serve three objectives:
Dawn Allen is a writer, copyeditor, and survivor of a celiac-related cancer. She writes for a community lifestyle magazine and volunteers at Canopy Cancer Survivorship Center to encourage others on similar journeys. Dawn seeks to further the mission at Beyond Celiac by contributing her skills and advocacy to raise awareness, support patient engagement, and accelerate research toward a cure.
Diagnosed with celiac disease in 2017, Kate has spent several chapters of her life navigating the gluten-free diet. From high school, to college at UConn, to the workforce, Kate was a fierce advocate for the celiac community before she found a home volunteering at Beyond Celiac. Since then, Kate has been a panelist for the org and now co-chairs the Beyond Celiac Patient and Family Advisory Board. In Kate’s ideal world, everyone with celiac disease has access to the right resources, education, and care team to live a fulfilling gluten-free life—no matter what chapter they’re in.
As a mom of three, with one child diagnosed with celiac disease and another with non-celiac gluten sensitivity (NCGS), Brie is honored to bring her family’s experiences to the table to help shape an increasingly supportive future for those living with these conditions. She is passionate about raising awareness, particularly in communities of color, where celiac disease and NCGS can be overlooked, in hopes of helping reduce delays in diagnosis, which her family experienced.
Originally from Spain, Isabella grew up in SouthEast Asia. She was diagnosed with celiac disease in high school and spent her student years fairly isolated from the celiac community. After graduating from Northeastern University she found Beyond Celiac and has since been a volunteer, panelist speaker at events, advisor to Beyond Celiac Investments, and now co-chair of the Beyond Celiac Patient and Family Advisory Board. Isabella is hoping to leverage the board to advance her mission to bridge the gap between drug development, health policy and the patient community.
Lillie is a high school student and athlete who was diagnosed with celiac disease at age 12, just a few months after being diagnosed with type one diabetes. Since then, she has learned a lot about how to navigate life gluten-free and wants to help others feel more understood and included. She is excited to share her experiences and be part of Patient and Family Advisory Board!
Tommy is married with two grown children and three cats. He has worked in the music industry for over 30 years, and has traveled the world extensively. Tommy had symptoms of celiac disease for close to 20 years, and it came to a head and continued worsening in late 2021. After bouncing between different specialists, he was diagnosed with celiac disease in January 2024. He is currently enrolled in a celiac drug clinical trial, and he hopes that a cure is found!
Cydnie was diagnosed with celiac disease in 2005, and she has three family members also diagnosed with celiac disease. She is a musician, piano teacher and songwriter, and she also works as a bookkeeper and golf course starter. When Cydnie isn’t working on celiac disease advocacy, she loves to golf, bike, travel, and spend time at her family’s cabin with her 12 grandchildren.
Anastasia is a globetrotter and advocate who was diagnosed with celiac disease while working for a leading global gluten-free brand. She now lives with celiac, IBS, endometriosis, PCOS, and genetic thrombophilia—but refuses to be defined by her diagnoses. Her mission is to spread awareness, hope, and a little pixie dust to remind others that a vibrant, empowered life is possible!
Having been diagnosed with celiac disease for four years now, Jaden is passionate about raising awareness and engaging with the gluten-free community. Jaden is a soon-to-be graduate of the University of St. Andrews, and as a chemist, loves to discuss exciting research being done for celiac disease. Outside of being a part of the “Gluten Free Gang”, Jaden enjoys theater, dance, and traveling.
Ashley is the proud owner of her own speech therapy practice and a passionate advocate for families living with celiac disease. After her daughter was diagnosed with celiac disease two years ago, she dedicated herself to ensuring her family and others have access to safe, gluten-free foods. Outside of her professional and advocacy work, she enjoys horseback riding, volunteering at her children’s school, and cheering on her kids at their sporting events.
Brad is a voice infrastructure engineer with nearly two decades of experience leading IT projects. He lives in Ohio with his wife, Heather, their 9-year-old daughter Brooklynn, and their golden retriever, Phoebe. They spend their free time playing outside, going to concerts, and supporting every activity that Brooklynn is interested in. She was diagnosed with celiac disease six years ago, and Brad is deeply committed to supporting her gluten-free journey as well as advocating for celiac research funding.
Elke is from Pennsylvania, and she is both a celiac patient and parent to a child with celiac disease. Elke enjoys traveling, and you can always find her exploring new foods, as she is passionate about finding new foods and restaurants that fit into her gluten-free life.
For any questions or inquiries regarding the PFAB, please reach out to Isabella at [email protected]
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