Summit Steering Committee
The purpose of the Celiac Disease Foundation Patient Education & Advocacy Summit is to address the serious public health challenge of treating celiac disease by further developing an educated patient/stakeholder network trained to advocate for federal recognition and funding of celiac disease needs. The Summit, supported by a Eugene Washington PCORI Engagement Award, will foster collaboration between research enterprise stakeholders and patient advocates in determining how best to engage patients as partners in research.
The Celiac Disease Foundation identified key leaders, visionaries, and stakeholders, including patients, caregivers, family members, clinicians, researchers, and policy advisors to form the patient-led Summit Advisory Council. The Summit Advisory Council is tasked with overseeing the meeting program and assuring it is patient-centered.
Summit Advisory Council Members
Josh Denney– Patient Advocate, Senior Vice President, Director of Government Affairs, BBVA
Ben Lebwohl, MD, MS– Columbia Celiac Disease Center, Young Investigator Award Recipient
Edwin Liu, MD– Director, Colorado Center for Celiac Disease
Joseph A. Murray, MD– Mayo Clinic
Duane Musser– Patient Advocate, Vice President, Government Relations, National Roofing Contractors Association
Jennifer Sealy-Voyksner, PhD– Patient Advocate, Chief Scientific Officer and Co-Founder, ImmunogenX
Kelsey Smith– Patient Advocate, Apple Leadership, iAdvocate Forum Moderator
Jocelyn Silvester, MD, PhD– Patient Advocate, Harvard Celiac Research Program, Young Investigator Award Recipient
Ritu Verma, MD– Patient Advocate, Director, University of Chicago Celiac Disease Center
Vanessa Weisbrod– Patient Advocate, Director, Celiac Disease Program, Boston Children’s Hospital