
When?
Saturday, August 2, 2025
Where?
Cincinnati Children's
3333 Burnet Ave
Cincinnati, OH 45229
Agenda
9 AM - 9:30 AM | Registration
9:30 AM - 12 PM | Programming
Welcome Remarks and debra of America Updates | Brett Kopelan, debra of America Executive Director
Eye Care in EB | Eniolami Dosumnu, MD
Dental Care in EB | Patrick Ruck, DDS & Bobby Thikkurissy, DDS, MS, MA
Treatment of Hand Contracture/Fibrosis in EB | Roger Cornwall, MD & Carrie Shotwell, Med, DHS, OTR/L
Repurposed Drugs in EB Care | Kalyani Marathe, MD, MPH
Genetics of EB | Sarah Crawford, Genetic Counselor
Concurrent Breakout Sessions:
Expert Panel: Pain Management in Children with EB | Anne Lynch-Jordan, PhD & Kenneth Goldschneider, MD, FAAP
Patient Panel: Sexuality and Childbearing in EB
12 PM - 1 PM | Catered Lunch
1 PM – 3:30 PM | Programming
Experience with VYJUVEK | Ashley Reeves, Senior Patient Access Liaison, Krystal Biotech; featuring EB Community Member Chelsea
ZEVASKYN: A New FDA-Approved Gene Therapy for RDEB Wounds | Sarah Abdelwahab, MD, MBA, Executive Medical Director, Head of Clinical Development, Abeona Therapeutics; featuring EB Community Member Lara
Understanding FILSUVEZ and Its Role in Epidermolysis Bullosa (EB) | Jill Boyett, PharmD, CPh, Medical Science Liaison, Chiesi USA
Your Cells, Our Science: Gene Therapy for Dystrophic Epidermolysis Bullosa | Robin Blumenthal, PhD, Assoc. VP, Clinical Operations, Castle Creek Biosciences
ABCB5+ Stem Cells for the Systemic Treatment of EB – An Update on the Phase III Trial | Dr. Cristina Daniele, Lead Clinical Project Manager, RHEACELL
TAMES-02 Clinical Trial for EB Simplex | Karen McGuire, PhD, CEO and Founder, BioMendics
3:30 PM – 4:30 PM | Social Hour
Featured Speaker:
Kalyani Marathe, MD, MPH
Division Director, Division of Dermatology
Associate Professor, UC Department of Pediatrics
UC Department of Dermatology
Featured Speaker:
Lisa Remer, MD
Attending Physician, Division of Hospital Medicine
Assistant Professor, UC Department of Pediatrics
Featured Speaker:
Beth Moeves, APRN-CNP
Advanced Practice Registered Nurse, Epidermolysis Bullosa Center
Cincinnati Children's
Featured Speaker:
Nichole Halliburton, MSN, APRN-CNP
Advanced Practice Registered Nurse, Division of Dermatology, Epidermolysis Bullosa Center
Cincinnati Children's