This month’s Town Hall, hosted by Allison McGettigan, Director of Programs at EBRP, brings us an inspiring and insightful conversation with EB community members from Australia

First Live Town Hall of 2025 was an enlightening discussion of the journey from bench to bedside care for EB, with three insightful points of view! Hosted by EBRP CEO Michael Hund, this Town Hall featured three incredible speakers: Kate Holler, EB Mom & Advocate; Dr. Jamie Feinstein, Professor of Pediatrics, University of Colorado; Dr. Ganna Bilousova, Associate Professor of Dermatology, University of Colorado

The EBRP team is joined by Elizabeth Hoffman, mom to Demah and passionate EB advocate, and Victoria Prieto Filice, Project Manager and Outreach Lead at Eliksa Therapeutics, whose exciting work EBRP has proudly funded. We discuss the complications of Junctional EB, corneal abrasions, and emerging therapies in this space.

This public discussion led by Team EBRP along with Emily Kubik, Elodie's mom and EBRP Board Member, Kristan Khtikian, Plunge for Elodie Co-Chair & Co-Creator, and Annie and Patterson McKenzie, EB warriors and advocates. We'll be discussing how the Plunge has grown into an international movement, helps EB families rally their communities, and directly led to progress in the field of EB.

A public discussion with Vice President of DEBRA International, Humphrey Hanley, and leading EB researcher from Thomas Jefferson University, Andrew South, PhD, whose exciting work EBRP has proudly funded. We discuss the complications of EB that come with getting older, squamous cell carcinoma, and emerging therapies in this space.

EBRP's inaugural town hall! A public discussion hosted by our CEO, Michael Hund, leading EB researcher from Stanford University, Anthony Oro, MD, PhD, whose exciting work EBRP has proudly funded, and Kirk Brazeau, father to Archer, a 6-year-old living with Recessive Dystrophic Epidermolysis Bullosa (RDEB).