September Town Hall
In our September Town Hall, we partnered with Castle Creek Biosciences for an informative discussion on their Phase 3 trial of D-Fi for the treatment of DEB wounds. D-Fi an innovative personalized treatment that is compatible with a patient’s unique biology (because it uses the patient’s own cells) and delivers functional Type VII collagen (COL7) protein where it is needed – at the site of wounds.
Paired with the personal perspective of a participant on the D-Fi trial, this Town Hall showed attendees what it's really like to be on a clinical trial and demonstrated the power and healing of innovative science.
Our speakers:
David Chu, M.D., Ph.D., F.A.A.D.
David Chu is the Chief Medical Officer of Castle Creek Biosciences, Inc. Dr. Chu has over 20 years of experience in dermatology, academic research, clinical practice, and pharmaceutical development. He previously served as Vice President, Clinical Development, at Arcutis Biotherapeutics, where he led clinical programs that supported the approval of multiple indications for Zoryve, a topical nonsteroidal therapy for several inflammatory skin diseases. Dr. Chu is also a board-certified dermatologist and Fellow of the American Academy of Dermatology.
Alicia Stewart-Smith
Alicia Stewart-Smith’s journey has been shaped by both triumphs and challenges. Living with Recessive Dystrophic Epidermolysis Bullosa (RDEB), a rare skin disorder, has not defined her, but instead strengthened her spirit and deepened her faith. Despite the daily physical obstacles that come with RDEB, she has learned to embrace life with courage, grace, and gratitude. As a licensed minister, Alicia finds joy in sharing words of hope and encouragement with others, believing that every person carries within them a wisdom that can lead to healing, growth, and success. Her personal mission is to inspire people to see beyond their struggles and discover the strength that already lives inside them.
Paired with the personal perspective of a participant on the D-Fi trial, this Town Hall showed attendees what it's really like to be on a clinical trial and demonstrated the power and healing of innovative science.
Our speakers:
David Chu, M.D., Ph.D., F.A.A.D.
David Chu is the Chief Medical Officer of Castle Creek Biosciences, Inc. Dr. Chu has over 20 years of experience in dermatology, academic research, clinical practice, and pharmaceutical development. He previously served as Vice President, Clinical Development, at Arcutis Biotherapeutics, where he led clinical programs that supported the approval of multiple indications for Zoryve, a topical nonsteroidal therapy for several inflammatory skin diseases. Dr. Chu is also a board-certified dermatologist and Fellow of the American Academy of Dermatology.
Alicia Stewart-Smith
Alicia Stewart-Smith’s journey has been shaped by both triumphs and challenges. Living with Recessive Dystrophic Epidermolysis Bullosa (RDEB), a rare skin disorder, has not defined her, but instead strengthened her spirit and deepened her faith. Despite the daily physical obstacles that come with RDEB, she has learned to embrace life with courage, grace, and gratitude. As a licensed minister, Alicia finds joy in sharing words of hope and encouragement with others, believing that every person carries within them a wisdom that can lead to healing, growth, and success. Her personal mission is to inspire people to see beyond their struggles and discover the strength that already lives inside them.
SEPTEMBER Town Hall Summary
This month's Town Hall began with a heartfelt interview between Dr. David Chu and Alicia Stewart-Smith, who generously shared her personal experience as a D-Fi trial participant. Alicia expressed that she was drawn to the D-Fi trial because she knew there had to be something else out there beyond her status-quo wound-care that could make a difference; not only for herself, but for the future generations of children born with EB. She was looking for something different, and when she learned that the D-Fi trial would use her own cells to hopefully promote healing, she quickly signed up. Though she was nervous at first to participate, her experience with Castle Creek was reassuring and comforting from their very first email. Alicia did personally experience wound-healing, especially on the back of her neck where wounds normally prevented her from shaking her head, stating that she felt better even just 24 hours after receiving her treatment*. She acknowledged the fear of looking for and participating in something different, but encouraged the EB community to "do it scared" because people like her are "hurting every day as it is, what do I have to lose? What do you have to lose?"
Dr. Chu then presented an overview of the Phase 3 D-Fi study, which is currently enrolling as of the date of this Town Hall, and is evaluating the safety and efficacy of an injectable gene therapy for DEB wounds. He explained that D-Fi is designed using each patient’s skin cells, which provide the fibroblasts used to make D-Fi. Each patient’s fibroblasts are banked to provide decades of medicine from a single biopsy. D-Fi contains the integrated COL7 gene, which lasts for the lifetime of the fibroblast. This therapy uses injections to puts collagen exactly where it’s needed--and it stays there. Dr. Chu also discussed the pain management options for receiving the therapy, which range from numbing cream to general anesthesia, and gave an overview of the timeline for participating in the trial, which consists of a screening period (~4 months), a treatment period (48 weeks), and a long-term follow-up period (through 15 years). Lastly, Dr. Chu discussed the eligibility, endpoints, safety, and locations of the clinical trial.
If you are interested in learning more about the D-Fi trial, please visit d-fi.castlecreekbio.com.
*Please note that Alicia's experiences as described above are uniquely her own experiences, and that participating in one of these trials does not guarantee that you or your loved one will experience any benefit other than helping Castle Creek advance the science in this field.
Dr. Chu then presented an overview of the Phase 3 D-Fi study, which is currently enrolling as of the date of this Town Hall, and is evaluating the safety and efficacy of an injectable gene therapy for DEB wounds. He explained that D-Fi is designed using each patient’s skin cells, which provide the fibroblasts used to make D-Fi. Each patient’s fibroblasts are banked to provide decades of medicine from a single biopsy. D-Fi contains the integrated COL7 gene, which lasts for the lifetime of the fibroblast. This therapy uses injections to puts collagen exactly where it’s needed--and it stays there. Dr. Chu also discussed the pain management options for receiving the therapy, which range from numbing cream to general anesthesia, and gave an overview of the timeline for participating in the trial, which consists of a screening period (~4 months), a treatment period (48 weeks), and a long-term follow-up period (through 15 years). Lastly, Dr. Chu discussed the eligibility, endpoints, safety, and locations of the clinical trial.
If you are interested in learning more about the D-Fi trial, please visit d-fi.castlecreekbio.com.
*Please note that Alicia's experiences as described above are uniquely her own experiences, and that participating in one of these trials does not guarantee that you or your loved one will experience any benefit other than helping Castle Creek advance the science in this field.
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.
