May 2026 Town Hall: A Conversation with FILSUVEZ® Friends Ambassador Mentors
This month, EBRP was thrilled to welcome the community to a very special Town Hall hosted in partnership with Chiesi. The conversation centered on the lived experience of raising a child with epidermolysis bullosa (EB) and what it means to find hope, community, and progress along the way. We were joined by two FILSUVEZ® Friends Ambassador Mentors, Sarah and Elizabeth, whose candor, warmth, and resilience made for a truly moving and meaningful session.
Meet the Speakers
Meghan from Chiesi's global rare disease marketing team led the conversation, alongside two extraordinary EB caregivers:
Sarah is the mother of Deylin, a boy diagnosed with junctional EB (JEB). When Deylin was born, there were no treatment options available. He had to be transferred to another hospital immediately after birth due to complications with his skin, and Sarah found herself in the incredibly painful position of processing a diagnosis she was not yet ready to say out loud. Sarah has since learned to be a fierce advocate for her son, reminding herself on the hard days that Deylin will do things on his own timeline. She was honest about the emotional weight of caregiving, "some days are very hard, and some days are not" and her honesty resonated deeply with everyone in the room.
Elizabeth is the mother of two children with Junctional EB: Demah and William. Demah showed symptoms right away and carries a specific genetic mutation that had never been seen before - a terrifying discovery for any parent. When William was bron, his EB, though also Junctional EB, presented much differently than Demah. Elizabeth spoke about the fear and stress of searching for information about JEB online in those early days, and the steep learning curve that followed. Because her two children have different presentations of EB, she has a uniquely broad perspective on how the disease can vary from person to person, even within the same family.
Sarah is the mother of Deylin, a boy diagnosed with junctional EB (JEB). When Deylin was born, there were no treatment options available. He had to be transferred to another hospital immediately after birth due to complications with his skin, and Sarah found herself in the incredibly painful position of processing a diagnosis she was not yet ready to say out loud. Sarah has since learned to be a fierce advocate for her son, reminding herself on the hard days that Deylin will do things on his own timeline. She was honest about the emotional weight of caregiving, "some days are very hard, and some days are not" and her honesty resonated deeply with everyone in the room.
Elizabeth is the mother of two children with Junctional EB: Demah and William. Demah showed symptoms right away and carries a specific genetic mutation that had never been seen before - a terrifying discovery for any parent. When William was bron, his EB, though also Junctional EB, presented much differently than Demah. Elizabeth spoke about the fear and stress of searching for information about JEB online in those early days, and the steep learning curve that followed. Because her two children have different presentations of EB, she has a uniquely broad perspective on how the disease can vary from person to person, even within the same family.
Path to Filsuvez
Sarah first heard about FILSUVEZ® from Deylin's EB nurse. She was unfamiliar with the treatment and came with a lot of questions, having seen mixed reviews in the community. The nurse explained that FILSUVEZ® could help heal wounds but was not a cure. Sarah appreciated the honesty, and after weighing it carefully, Deylin was prescribed FILSUVEZ® just before his first birthday. Since starting treatment, they have seen progression in wound healing, and Dalen has not experienced any side effects.
Elizabeth's path looked a little different. When FILSUVEZ® was approved, she brought it up proactively with Demah's dermatologist. Nothing else had been providing lasting relief, and the idea of something she could apply and manage at home was appealing. She was also drawn to the fact that it is a natural treatment. Elizabeth and her childrens' care teams agreed it was worth trying. Demah and William have seen significant healing since particularly on Demah's stubborn and acute wounds. Although this is not a full cure, Elizabeth emphasized that the progress itself is something to celebrate.
FILSUVEZ® (birch triterpenes) topical gel is an FDA-approved treatment. Individual results may vary. If you have questions about FILSUVEZ®, speak with your child's care team.
Read more at filsuvez.com
Elizabeth's path looked a little different. When FILSUVEZ® was approved, she brought it up proactively with Demah's dermatologist. Nothing else had been providing lasting relief, and the idea of something she could apply and manage at home was appealing. She was also drawn to the fact that it is a natural treatment. Elizabeth and her childrens' care teams agreed it was worth trying. Demah and William have seen significant healing since particularly on Demah's stubborn and acute wounds. Although this is not a full cure, Elizabeth emphasized that the progress itself is something to celebrate.
FILSUVEZ® (birch triterpenes) topical gel is an FDA-approved treatment. Individual results may vary. If you have questions about FILSUVEZ®, speak with your child's care team.
Read more at filsuvez.com
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.
