Exploring the Journey from Bench to Bedside Care
Our 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
A passionate member of our EB community, Kate shared her family’s journey with EB, from pregnancy and birth to Rowan’s diagnosis. She discussed the challenges of navigating the medical system, taking action to find resources, and eventually finding life-changing support through Children’s Hospital Colorado. She also talked about key aspects of Rowan’s care such as using a G-Tube, palliative care, and participating in clinical trials.
Dr. Jamie Feinstein, Professor of Pediatrics, University of Colorado; Primary Care Pediatrician, Children’s Hospital Colorado
Dr. Feinstein is the Pediatric Director of the Children’s Hospital Colorado Multidisciplinary EB Clinic and also Rowan’s primary care pediatrician. In this Town Hall, he highlighted the power of a comprehensive care team and how collaboration across specialists has improved overall quality of life for EB patients.
Dr. Ganna Bilousova, Associate Professor of Dermatology, University of Colorado
A leading researcher in human medical genetics and genomics, Dr. Bilousova presented groundbreaking work on gene therapy using IPS cells, skin organoids, and spray-on skin technology—all aimed at developing a permanent, personalized treatment for EB and making a lasting impact on all those touched by the disease.
Kate Holler, EB Mom & Advocate
A passionate member of our EB community, Kate shared her family’s journey with EB, from pregnancy and birth to Rowan’s diagnosis. She discussed the challenges of navigating the medical system, taking action to find resources, and eventually finding life-changing support through Children’s Hospital Colorado. She also talked about key aspects of Rowan’s care such as using a G-Tube, palliative care, and participating in clinical trials.
Dr. Jamie Feinstein, Professor of Pediatrics, University of Colorado; Primary Care Pediatrician, Children’s Hospital Colorado
Dr. Feinstein is the Pediatric Director of the Children’s Hospital Colorado Multidisciplinary EB Clinic and also Rowan’s primary care pediatrician. In this Town Hall, he highlighted the power of a comprehensive care team and how collaboration across specialists has improved overall quality of life for EB patients.
Dr. Ganna Bilousova, Associate Professor of Dermatology, University of Colorado
A leading researcher in human medical genetics and genomics, Dr. Bilousova presented groundbreaking work on gene therapy using IPS cells, skin organoids, and spray-on skin technology—all aimed at developing a permanent, personalized treatment for EB and making a lasting impact on all those touched by the disease.
EBRP live Town Halls
Our monthly Live Town Halls help drive research and awareness with informative discussions led by trusted specialists and advocates in the EB space. Topics include current research, clinical trials, caring for loved ones with EB, and more. Town Halls are open to anyone interested in learning more about EB and the future of EB treatment and care. Check out more of our Town Halls here.
To register for our next Live Town Hall, click here.
To register for our next Live Town Hall, click here.
