CANDID Virtual Meeting · June 8–9, 2022
What We Learned Together
This meeting — partially funded by NIH — brought together leading gastroenterologists, neurologists, and families to share what is known and what still needs to be discovered about GI dysfunction in NDDs. Browse the session summaries below.
Session Summaries
Conference Sessions
Each session is summarized for busy parents and caregivers. Click any session to expand it and watch the full recording on the CANDID YouTube channel.
Intro & Welcome — Setting the Stage
This opening session introduced the purpose of CANDID and the scale of the problem: GI disorders in people with NDDs are common, often severe, and dramatically underserved. Dr. Bennett, a pediatric gastroenterologist at Riley Children’s Hospital, framed the key questions the meeting would address.
Family Panel — The Impact of GI Disorders on Daily Life
Four families shared their firsthand experiences managing extreme GI symptoms — including constipation, reflux/GERD, cyclic vomiting, pain, and the use of feeding tubes — in loved ones with NDDs. Their accounts highlighted the urgent need for clinical tools and treatments designed for this population, and the emotional toll of symptoms being dismissed as “just part of the NDD.”
Key takeaway for parents: You are not alone. The experiences shared here reflect a widespread gap in care that CANDID is working to close.
Survey Results — GI Dysfunction Across NDD Groups
Dr. William Bennett, MD, MS
Dr. Bennett presented the results of CANDID’s survey on GI dysfunction across multiple NDD groups. The data confirmed high rates of constipation, reflux, and other GI conditions across diagnoses, providing the first cross-NDD quantitative picture of this problem. These results are now published — see the Science & Resources page for the full paper.
The Gut-Brain Connection
Dr. Andres Jimenez Gomez & Dr. Kent Williams
This session explored the biological links between the brain and GI system. Dr. Jimenez Gomez (neurologist) and Dr. Kent Williams (gastroenterologist) discussed why people with NDDs are uniquely vulnerable to GI dysfunction. Questions addressed include: What causes chronic diarrhea? Is daily suppository use harmful? Do seizure medications affect the gut?
Nutrition, GI Dysfunction & the Microbiome
Dr. Kathleen Motil & Dr. Kara Gross Margolis
Dr. Motil drew on her extensive work with Rett syndrome to explain how nutritional deficiencies and GI dysfunction reinforce each other. Dr. Gross Margolis presented research on the gut-brain-microbiome axis in autism, discussing how gut neurons affect inflammation — and what this may mean for future probiotic and prebiotic treatments.
Detecting GI Distress in People Who Cannot Self-Report
Dr. Joseph Croffie & Dr. Baha Moshiree
Many people with NDDs struggle to communicate pain or discomfort, making GI diagnosis uniquely difficult. This session identified the shortcomings of standard diagnostic tools and called for new approaches designed for this population. Both speakers emphasized that current protocols are inadequate and that this is an urgent research priority.
On the Horizon — New Methods for Studying GI in NDDs
Dr. Calliope Holingue & Dr. Julia Dallman
Dr. Holingue described her work developing NDD-appropriate surveys to assess GI dysfunction, addressing the gap in validated tools for this population. Dr. Dallman presented research using zebrafish as a model for understanding gut motility deficits linked to autism genes, as well as a new app — the Stripe symptom tracker — being developed to help families monitor GI symptoms at home.