November Town Hall
In our November Town Hall, we gathered to talk about revolutionizing RDEB care. This month's webinar brought together the personal experiences of an EB family with the latest insights from leading researchers and clinicians at the Children’s Hospital of Philadelphia, highlighting how compassion and innovation work hand in hand to drive progress towards a cure. We heard from Amanda Robertello, mother to Graham, about her family's journey with RDEB and how the way they care for their son has evolved, Dr. Marissa Perman about the world-class EB Clinic at CHOP and lastly from Dr. Bill Peranteau on the ground-breaking research being done at CHOP to change the future of EB and rare disease at large.
Our speakers:
Amanda Robertello
Amanda is a selfless leader in the EB community and a tireless fundraiser and community event organizer. Her son Graham, who lives with EB, is the inspiration behind Grateful for Graham, a 5K run/walk she founded to unite her local community in Utica, NY. A licensed occupational therapist in the Utica City School District, Amanda brings her compassion and expertise to her work supporting children and families every day. Through both her profession and her advocacy, she continues to create meaningful impact by empowering others and turning hope into action for the EB community.
Dr. Marissa Perman
Dr. Perman is a pediatric dermatologist, the Section Chief of Dermatology, and the Director of the Epidermolysis Bullosa Multidisciplinary Clinic at Children's Hospital of Philadelphia (CHOP). Outside of work, she still loves playing lacrosse, spending time with her family and 2 dogs, and watching her 2 sons, Zachary and Brady, grow up and play sports.
Dr. Bill Peranteau
Dr. Peranteau is an attending fetal and pediatric surgeon in the Division of General, Thoracic and Fetal Surgery at Children's Hospital of Philadelphia. He holds the Adzick-McCausland Distinguished Chair in Fetal and Pediatric Surgery and has served as a research fellow with CHOP’s Center for Fetal Research for four years, investigating the role of in utero bone marrow and stem cell transplantation for the management of congenital hematologic disorders such as sickle cell disease. Dr. Peranteau is also an attending surgeon at the Hospital of the University of Pennsylvania as well as a Member of Institute for Translational Medicine and Therapeutics of the Perelman School of Medicine at the University of Pennsylvania.
Our speakers:
Amanda Robertello
Amanda is a selfless leader in the EB community and a tireless fundraiser and community event organizer. Her son Graham, who lives with EB, is the inspiration behind Grateful for Graham, a 5K run/walk she founded to unite her local community in Utica, NY. A licensed occupational therapist in the Utica City School District, Amanda brings her compassion and expertise to her work supporting children and families every day. Through both her profession and her advocacy, she continues to create meaningful impact by empowering others and turning hope into action for the EB community.
Dr. Marissa Perman
Dr. Perman is a pediatric dermatologist, the Section Chief of Dermatology, and the Director of the Epidermolysis Bullosa Multidisciplinary Clinic at Children's Hospital of Philadelphia (CHOP). Outside of work, she still loves playing lacrosse, spending time with her family and 2 dogs, and watching her 2 sons, Zachary and Brady, grow up and play sports.
Dr. Bill Peranteau
Dr. Peranteau is an attending fetal and pediatric surgeon in the Division of General, Thoracic and Fetal Surgery at Children's Hospital of Philadelphia. He holds the Adzick-McCausland Distinguished Chair in Fetal and Pediatric Surgery and has served as a research fellow with CHOP’s Center for Fetal Research for four years, investigating the role of in utero bone marrow and stem cell transplantation for the management of congenital hematologic disorders such as sickle cell disease. Dr. Peranteau is also an attending surgeon at the Hospital of the University of Pennsylvania as well as a Member of Institute for Translational Medicine and Therapeutics of the Perelman School of Medicine at the University of Pennsylvania.
November Town Hall Summary
Amanda opened the town hall by reflecting on lessons learned from Graham about resilience. She spoke about the annual 5K her community has rallied around called Grateful for Graham 5K and how this race continues to grow each year reminding her and her family that they are not alone in their journey. Amanda highlighted that Grateful for Graham has more than doubled in size over the past four years, increasing from 200 to 500 participants and shares some insight into how her and her community have made this event such a success.
The next Grateful for Graham 5k is scheduled for Saturday, May 2nd 2026 (Subject to change). To stay up to date on Grateful for Graham please visit @gratefulforgraham5k in Instagram.
Dr. Marissa Perman followed sharing an overview of CHOP’s innovative, patient-centered multidisciplinary EB clinic, highlighting how collaboration has been central to its progress. She described how CHOP partners closely with other EB centers within the EBCRC, to learn from one another and advance care.
Dr. Perman reflected on her own path into EB care, beginning at Cincinnati Children's Hospital before moving to CHOP to help build and grow what is now a newer clinic established in 2017. While CHOP primarily serves the East Coast, she noted their reach also extends globally through an international health program. Throughout her remarks, she emphasized the strength of their multidisciplinary approach and the team’s commitment to continually improving care for individuals with EB.
Lastly, we heard from Dr. Bill Peranteau about Therapeutic Gene Editing for Recessive Dystrophic Epidermolysis Bullosa research happening at CHOP.
*Dr. Peranteau's portion of the presentation contains unpublished, confidential data and is not able to be shared publicly. If you have any questions or want to know more about this research, please contact [email protected]
The next Grateful for Graham 5k is scheduled for Saturday, May 2nd 2026 (Subject to change). To stay up to date on Grateful for Graham please visit @gratefulforgraham5k in Instagram.
Dr. Marissa Perman followed sharing an overview of CHOP’s innovative, patient-centered multidisciplinary EB clinic, highlighting how collaboration has been central to its progress. She described how CHOP partners closely with other EB centers within the EBCRC, to learn from one another and advance care.
Dr. Perman reflected on her own path into EB care, beginning at Cincinnati Children's Hospital before moving to CHOP to help build and grow what is now a newer clinic established in 2017. While CHOP primarily serves the East Coast, she noted their reach also extends globally through an international health program. Throughout her remarks, she emphasized the strength of their multidisciplinary approach and the team’s commitment to continually improving care for individuals with EB.
Lastly, we heard from Dr. Bill Peranteau about Therapeutic Gene Editing for Recessive Dystrophic Epidermolysis Bullosa research happening at CHOP.
*Dr. Peranteau's portion of the presentation contains unpublished, confidential data and is not able to be shared publicly. If you have any questions or want to know more about this research, please contact [email protected]
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.
