June 2026 Town Hall: The Power of Art and Science
This month, EBRP welcomed the community to a Town Hall unlike any other, one that bridged creative expression with the science of hope. From the unveiling of a first-of-its-kind community art book to a firsthand account of ZEVASKYN and a clinical deep-dive from one of the world's leading EB researchers, the conversation reminded us that progress in EB is happening on every front. We were joined by three remarkable speakers: Lara Peck, Dr. Amy Paller, and Emily Boros-Rausch, each bringing a distinct and powerful voice to the conversation.
Unveiling Wings of Resilience: The Community Art Book
The town hall opened with the debut of Wings of Resilience, a community art book created in partnership with Abeona Therapeutics to celebrate the creativity living inside this community. EBRP put out a simple invitation: if you're an artist in the EB community, share your work. The response was overwhelming.
Thirty artists from 10 countries submitted more than 60 pieces across nine different mediums, including paintings, drawings, poetry, and music. The result is a coffee-table-quality book that captures something words alone rarely can: the lived experience of navigating EB, with all its grief, resilience, and beauty.
View the artbook Here.
The town hall opened with the debut of Wings of Resilience, a community art book created in partnership with Abeona Therapeutics to celebrate the creativity living inside this community. EBRP put out a simple invitation: if you're an artist in the EB community, share your work. The response was overwhelming.
Thirty artists from 10 countries submitted more than 60 pieces across nine different mediums, including paintings, drawings, poetry, and music. The result is a coffee-table-quality book that captures something words alone rarely can: the lived experience of navigating EB, with all its grief, resilience, and beauty.
View the artbook Here.
Lara Peck: Understanding ZEVASKYN First-Hand
Lara is a mom of three, a special education teacher, Certified Wilson Dyslexia Practitioner, and an advocate within the EB community. Living with recessive dystrophic EB has required Lara to learn resilience, independence, and determination. In 2017, Lara participated in an early clinical trial for what is now known as ZEVASKYN, and that experience strengthened her commitment to advocacy and to helping advance awareness and progress for individuals living with EB.
Lara was born in 1971 and raised three children as a single mother, balancing wound care, work, and parenting with determination. Throughout her life, she experienced a wound on her upper back which refused to heal for years, gradually draining her health and pulling her away from the life she had built. When her dermatologist asked if she would be interested in joining a clinical trial for what would become ZEVASKYN, she didn't hesitate.
"Going through the ZEVASKYN trial turned out to be one of the best decisions I ever made," Lara said. "If I developed another difficult-to-heal area, I would choose it again without hesitation."
The treated area of her back has remained completely healed to this day. Her immune system strengthened. She regained the ability to be fully present for her children. Lara now shares her story widely, knowing what it means for someone facing uncertainty about a new treatment to hear from someone who has been through it. "Advocacy was not only important because it gave me a purpose and connection with others who truly understood this journey, but also because of what it could mean for future generations."
Lara was born in 1971 and raised three children as a single mother, balancing wound care, work, and parenting with determination. Throughout her life, she experienced a wound on her upper back which refused to heal for years, gradually draining her health and pulling her away from the life she had built. When her dermatologist asked if she would be interested in joining a clinical trial for what would become ZEVASKYN, she didn't hesitate.
"Going through the ZEVASKYN trial turned out to be one of the best decisions I ever made," Lara said. "If I developed another difficult-to-heal area, I would choose it again without hesitation."
The treated area of her back has remained completely healed to this day. Her immune system strengthened. She regained the ability to be fully present for her children. Lara now shares her story widely, knowing what it means for someone facing uncertainty about a new treatment to hear from someone who has been through it. "Advocacy was not only important because it gave me a purpose and connection with others who truly understood this journey, but also because of what it could mean for future generations."
Dr. Amy Paller: A Clinical Perspective on ZEVASKYN
Dr. Paller is a researcher and clinician specializing in pediatric dermatology. She serves as the Walter J. Hamlin Professor of Dermatology and Pediatrics and Chair of the Department of Dermatology at Northwestern University Feinberg School of Medicine, directs the NIH-funded Skin Biology and Diseases Resource-Based Center, and practices at Lurie Children's Hospital of Chicago, where she focuses her work on genetic and inflammatory skin disorders in children, including EB. She has led more than 130 clinical trials related to pediatric genetic and inflammatory skin disorders, contributing significantly to advancing new treatments, understanding skin diseases, and capturing the outcomes reported by patients and parents that critically impact quality of life. Dr. Paller has been a member of EBRP's Scientific Advisory Board for more than a decade, and Northwestern was the first qualified treatment center to administer ZEVASKYN commercially.
ZEVASKYN is the third FDA-approved treatment for EB, approved in April 2025. Dr. Paller described it as "the first thing we have that could potentially cure, at least in the areas where it is applied." The process uses a patient's own skin cells, corrected with a working collagen 7 gene and expanded into grafts up to the size of 12 credit cards.
Since FDA approval, Northwestern has performed five procedures so far, prioritizing patients with the greatest wound burden, some with skin that had been open for years. Results develop over weeks to months, the safety profile has been strong, and pain medication needs have been lower than expected.
"This is really the first one where we don't have to once a week be putting a medication on," Dr. Paller said. "It is truly gene corrective. That's such a huge step for EB."
ZEVASKYN is the third FDA-approved treatment for EB, approved in April 2025. Dr. Paller described it as "the first thing we have that could potentially cure, at least in the areas where it is applied." The process uses a patient's own skin cells, corrected with a working collagen 7 gene and expanded into grafts up to the size of 12 credit cards.
Since FDA approval, Northwestern has performed five procedures so far, prioritizing patients with the greatest wound burden, some with skin that had been open for years. Results develop over weeks to months, the safety profile has been strong, and pain medication needs have been lower than expected.
"This is really the first one where we don't have to once a week be putting a medication on," Dr. Paller said. "It is truly gene corrective. That's such a huge step for EB."
Emily Boros-Rausch: The Power of Art and the Patient JourneY
Emily Boros-Rausch is a Toronto-born, Moncton-based artist whose work explores the intersections of textiles, painting, design, and personal narrative. Her artistic journey has been shaped by her travels, her experiences working with communities around the world, and her journey navigating life with EB. These days she works full-time as a visual artist from her home studio, recently focusing on creating large-scale abstract paintings that incorporate textiles she collected during her travels. She is also a board member at DEBRA Canada and a DEBRA International Youth Council leader.
Diagnosed with dominant dystrophic EB shortly after birth, Emily grew up channeling what she couldn't do in sports into visual art. At OCAD University, her thesis project designing more fashionable bandage covers reconnected her with the EB community and set the course for the advocacy work she does today. On difficult days, she described learning to listen to her body and rest when needed, finding that taking care of herself leads to better skin health and more inspired work.
On being part of Wings of Resilience: "It is such a powerful tool of self-expression for those living with EB. I am so honored to be one of the artists featured alongside 30 other individuals living and thriving with EB."
Emily's work can be found at emilyborosrausch.com
Diagnosed with dominant dystrophic EB shortly after birth, Emily grew up channeling what she couldn't do in sports into visual art. At OCAD University, her thesis project designing more fashionable bandage covers reconnected her with the EB community and set the course for the advocacy work she does today. On difficult days, she described learning to listen to her body and rest when needed, finding that taking care of herself leads to better skin health and more inspired work.
On being part of Wings of Resilience: "It is such a powerful tool of self-expression for those living with EB. I am so honored to be one of the artists featured alongside 30 other individuals living and thriving with EB."
Emily's work can be found at emilyborosrausch.com
Q&A Highlights
Advice for grandparents of a newborn with dystrophic EB?
All three speakers weighed in. Emily encouraged grandparents to give the child space to figure out their own limits and to support their interests with creative problem-solving. Dr. Paller, speaking as a grandmother herself, advised being present and helpful without directing: offering an extra set of hands for dressing changes, financial support, and most importantly, holding back unsolicited opinions. Lara echoed the theme: let the child be a child. "Make EB as little a part of their day as possible," she said. Dr. Paller also raised something less often discussed: making sure siblings receive equal time and attention. Every member of the family carries the weight of this disease.
Can ZEVASKYN be used in hand correction surgery?
Not yet in its current form. The grafts are sized as rectangles that cannot be cut or reshaped. But Dr. Paller noted that Abeona is actively working on this and that customizable sizing would open the door to use in contractures, hand surgery, and smaller or irregularly shaped wounds.
Can ZEVASKYN work alongside VYJUVEK or FILSUVEZ?
Dr. Paller shared that she has seen these treatments complement each other. During and after the grafting process, physicians have continued treating other areas with the approved topical therapies. She did advise to avoid anything that could interfere with the grafted area in the months immediately following the procedure to ensure the best healing outcomes possible.
Could ZEVASKYN eventually be applied to other rare diseases?
Dr. Paller sees the most immediate extension as other forms of EB, particularly junctional subtypes. More broadly, she acknowledged that skin-replacement approaches could eventually be considered for other genetic skin disorders, but emphasized that substantial experience with EB needs to come first.
All three speakers weighed in. Emily encouraged grandparents to give the child space to figure out their own limits and to support their interests with creative problem-solving. Dr. Paller, speaking as a grandmother herself, advised being present and helpful without directing: offering an extra set of hands for dressing changes, financial support, and most importantly, holding back unsolicited opinions. Lara echoed the theme: let the child be a child. "Make EB as little a part of their day as possible," she said. Dr. Paller also raised something less often discussed: making sure siblings receive equal time and attention. Every member of the family carries the weight of this disease.
Can ZEVASKYN be used in hand correction surgery?
Not yet in its current form. The grafts are sized as rectangles that cannot be cut or reshaped. But Dr. Paller noted that Abeona is actively working on this and that customizable sizing would open the door to use in contractures, hand surgery, and smaller or irregularly shaped wounds.
Can ZEVASKYN work alongside VYJUVEK or FILSUVEZ?
Dr. Paller shared that she has seen these treatments complement each other. During and after the grafting process, physicians have continued treating other areas with the approved topical therapies. She did advise to avoid anything that could interfere with the grafted area in the months immediately following the procedure to ensure the best healing outcomes possible.
Could ZEVASKYN eventually be applied to other rare diseases?
Dr. Paller sees the most immediate extension as other forms of EB, particularly junctional subtypes. More broadly, she acknowledged that skin-replacement approaches could eventually be considered for other genetic skin disorders, but emphasized that substantial experience with EB needs to come first.
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.
