August 2026 Town Hall: Life with Junctional EB and progress in the space
This month's town hall was focused on junctional EB, and it brought together two compelling voices in the space: Hodges Caldwell Jr., founder and CEO of EBLife and a man who lives with JEB and has continued to advocate for the EB community for nearly five decades, and Dr. Peter Marinkovich, Associate Professor of Dermatology at Stanford University. The conversation was hosted by Michael Hund.
Hodges Caldwell Jr.: A Life of Firsts
Hodges Caldwell Jr. is the founder and CEO of EBLife, a 501(c)(3) nonprofit whose mission is to donate lightweight, portable mobility aids to the EB community to help individuals regain their mobility and independence. Hodges lives with junctional EB and has understood the struggle of mobility firsthand. He has been involved in numerous clinical trials and research programs since the age of four and was primarily raised at Rockefeller University Hospital in New York under Dr. Martin Carter, where he successfully had one of the first skin graft procedures. He was also the first person with EB to participate in a clinical trial for pseudomonic acid, known commercially as Bactroban or by its generic name, Mupirocin ointment. Hodges has also participated in clinical trials at Miami University and Stanford University under Dr. Jean Tang.
Hodges was born in 1979, diagnosed with junctional EB at six months old, and given a life expectancy of two years.
This August, he turned 47.
He shared a life defined by firsts: one of the first EB skin graft procedures at Rockefeller University Hospital under Dr. Martin Carter; testimony before Congress alongside his mother that helped pave the way for Bactroban's FDA approval; and later, clinical trials at Stanford under Dr. Jean Tang. After Dr. Carter's passing in 1992, Hodges stayed connected to the research world, eventually heading west when he saw the science beginning to catch up to what the community had been hoping for decades.
By his early 30s, Hodges had lost the ability to walk. His insurance company repeatedly denied him a lightweight mobility device, calling it a luxury item. After three appeals and months spent effectively homebound, he won the case and turned his experience into a mission. EBLife, founded in 2021, has since donated 30 portable mobility aids to the EB community and is staffed primarily by people living with EB themselves.
"The word cure is in the conversation now," Hodges said. "That's mind-blowing to me." Hodges feels strongly that there is a better future for the generations to come, and that soon many of the daily struggles EB patients face will be solved.
Hodges was born in 1979, diagnosed with junctional EB at six months old, and given a life expectancy of two years.
This August, he turned 47.
He shared a life defined by firsts: one of the first EB skin graft procedures at Rockefeller University Hospital under Dr. Martin Carter; testimony before Congress alongside his mother that helped pave the way for Bactroban's FDA approval; and later, clinical trials at Stanford under Dr. Jean Tang. After Dr. Carter's passing in 1992, Hodges stayed connected to the research world, eventually heading west when he saw the science beginning to catch up to what the community had been hoping for decades.
By his early 30s, Hodges had lost the ability to walk. His insurance company repeatedly denied him a lightweight mobility device, calling it a luxury item. After three appeals and months spent effectively homebound, he won the case and turned his experience into a mission. EBLife, founded in 2021, has since donated 30 portable mobility aids to the EB community and is staffed primarily by people living with EB themselves.
"The word cure is in the conversation now," Hodges said. "That's mind-blowing to me." Hodges feels strongly that there is a better future for the generations to come, and that soon many of the daily struggles EB patients face will be solved.
Dr. Peter Marinkovich: Gene Therapy for the Junctional EB Airway
Dr. Peter Marinkovich is Associate Professor of Dermatology at Stanford University, where he holds faculty appointments in both the Program in Epithelial Biology and the Stanford Cancer Biology Program. As Director of the Stanford Bullous Disease and Psoriasis Clinics and an attending dermatologist at the VA Palo Alto Medical Center, he brings deep clinical expertise to some of dermatology's most challenging conditions, driving groundbreaking research into the pathogenesis and treatment of epidermolysis bullosa, autoimmune blistering diseases, psoriasis, and skin cancer. An innovator as much as a clinician, Dr. Marinkovich holds 8 patents spanning breakthroughs from stable collagen production and delivery to novel methods for modulating hair growth and inhibiting Squamous Cell Carcinoma. He also serves on the Program Committee of EB Clinet, the Dermatology Diversity and Inclusion Committee at Stanford University School of Medicine, and is an active member of the Society for Investigative Dermatology.
Dr. Marinkovich opened with the origin of a key discovery: early in his career, he helped identify Laminin 332, the protein responsible for anchoring the skin together at the junction between the epidermis and dermis. In junctional EB, this protein is absent or severely reduced. Its absence is what causes the disease, and in the most severe cases, it is fatal.
The most common cause of death in lethal junctional EB is not the skin. It is the airway. Blistering and inflammation in the throat and oral cavity can narrow or block the airway to the point where infants die suddenly, even with their skin disease being managed. Existing skin grafting approaches don't reach this problem. Dr. Marinkovich's current EBRP-funded research, in collaboration with otolaryngology researcher Dr. Dawn Bravo, is aimed directly at solving this issue.
The approach works similarly to ZEVASKYN: mucosal keratinocytes are taken from the patient, the correct Laminin 332 gene is inserted using a lentivirus, and the corrected cells are transplanted back into the airway. Because Laminin 332-expressing cells adhere far more strongly to tissue than non-expressing cells, they naturally out-compete their way across the oral cavity and tracheal surfaces. In mouse models, the gene-corrected cells are establishing strongly in the right locations, expressing and secreting Laminin 332 where it is needed, and staying out of areas where they are not.
The lab is now measuring survival and respiratory function in treated mice. Once consistent rescue is demonstrated, the goal is to apply to the FDA for compassionate use approval to bring this therapy to infants with lethal junctional EB.
"It's about time we start getting into some corrective therapy for junctional EB patients," Dr. Marinkovich said. "I'm really excited to work with EBRP and try to make it happen."
Dr. Marinkovich also flagged an emerging finding that could matter for families right now. His lab is seeing a pattern of autoantibodies in both dystrophic and junctional EB patients that may be contributing to disease severity beyond the genetic defect alone. IVIG, which can reduce those antibody levels, is already showing benefit in dystrophic patients. A simple blood test, ordered through a local doctor, can determine whether those autoantibodies are present in junctional patients too, and could open a near-term treatment option even before gene therapy reaches the clinic. For more information, families can reach Dr. Marinkovich directly at [email protected].
Dr. Marinkovich opened with the origin of a key discovery: early in his career, he helped identify Laminin 332, the protein responsible for anchoring the skin together at the junction between the epidermis and dermis. In junctional EB, this protein is absent or severely reduced. Its absence is what causes the disease, and in the most severe cases, it is fatal.
The most common cause of death in lethal junctional EB is not the skin. It is the airway. Blistering and inflammation in the throat and oral cavity can narrow or block the airway to the point where infants die suddenly, even with their skin disease being managed. Existing skin grafting approaches don't reach this problem. Dr. Marinkovich's current EBRP-funded research, in collaboration with otolaryngology researcher Dr. Dawn Bravo, is aimed directly at solving this issue.
The approach works similarly to ZEVASKYN: mucosal keratinocytes are taken from the patient, the correct Laminin 332 gene is inserted using a lentivirus, and the corrected cells are transplanted back into the airway. Because Laminin 332-expressing cells adhere far more strongly to tissue than non-expressing cells, they naturally out-compete their way across the oral cavity and tracheal surfaces. In mouse models, the gene-corrected cells are establishing strongly in the right locations, expressing and secreting Laminin 332 where it is needed, and staying out of areas where they are not.
The lab is now measuring survival and respiratory function in treated mice. Once consistent rescue is demonstrated, the goal is to apply to the FDA for compassionate use approval to bring this therapy to infants with lethal junctional EB.
"It's about time we start getting into some corrective therapy for junctional EB patients," Dr. Marinkovich said. "I'm really excited to work with EBRP and try to make it happen."
Dr. Marinkovich also flagged an emerging finding that could matter for families right now. His lab is seeing a pattern of autoantibodies in both dystrophic and junctional EB patients that may be contributing to disease severity beyond the genetic defect alone. IVIG, which can reduce those antibody levels, is already showing benefit in dystrophic patients. A simple blood test, ordered through a local doctor, can determine whether those autoantibodies are present in junctional patients too, and could open a near-term treatment option even before gene therapy reaches the clinic. For more information, families can reach Dr. Marinkovich directly at [email protected].
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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.
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