Founder & Principle Investigator
Dr. Johanna Sweet is the Founder and Principle Investigator of the XP Foundation, and a Professor of Business Administration at Roanoke College. While her background in healthcare administration, higher education, and research provides a strong foundation for her work, her greatest inspiration comes from her own family.
As the mother of two children, including a daughter with XP-C and a son with celiac disease, Johanna understands firsthand the challenges, uncertainties, and hopes that come with navigating rare and chronic health conditions. Her personal experiences have inspired a deep commitment to connecting families, healthcare providers, and researchers, fostering collaboration, expanding knowledge, and improving the lives of those affected by XP.
Driven by the belief that no family should have to navigate XP alone, Johanna founded the XP Foundation to turn that commitment into meaningful action through its RARE Initiative: Registry, Advocacy, Research, and Education. Her vision is to build a supportive, informed, and connected community where families feel empowered, research creates new opportunities, and individuals living with XP can look toward the future with greater hope and possibility.
BOARD OF DIRECTORS
Executive Director
Administrative Officer
Executive Director
Dr. Johanna Sweet is the Founder and Executive Director of the Xeroderma Pigmentosum (XP) Foundation and a Professor of Business Administration at Roanoke College. Dr. Sweet is the Principle Investigator of the XP Registry. Her daughter, Emma, was diagnosed with XP-C at age 2.
Finance Officer
Administrative Officer
Executive Director
Angie May came into the XP community in 2018 when her only child, Adeline, was diagnosed with XP-D at 19 months. Since diagnosis Angie has partnered with her Husband, Dwayne, to advocate for Adeline and share experiences and ideas to empower others. Angie provides English literacy support to elementary age students through tutoring and
Angie May came into the XP community in 2018 when her only child, Adeline, was diagnosed with XP-D at 19 months. Since diagnosis Angie has partnered with her Husband, Dwayne, to advocate for Adeline and share experiences and ideas to empower others. Angie provides English literacy support to elementary age students through tutoring and volunteer services
“The XP Foundation is the next step in growth for the XP community. I am honored to be a part of this amazing organization and the changes it brings.” -Angie May
Administrative Officer
Administrative Officer
Administrative Officer
Miranda Murphy
MEDICAL ADVISORY BOARD
Emily Doherty, MD
Karina Miller, DDS
Emily Doherty, MD
Dr. Emily Doherty, MD, FAAP, FACMG, is Section Chief of Genetics at Carilion Clinic and an Associate Professor of Pediatrics at the Virginia Tech Carilion School of Medicine. Board-certified in pediatrics and clinical genetics, she specializes in diagnosing and managing rare genetic disorders, helping patients and families navigate complex genetic conditions.
John Facciani, MD
Karina Miller, DDS
Emily Doherty, MD
Dr. John M. Facciani is a board-certified ophthalmologist at Vistar Eye Center, specializing in pediatric ophthalmology and strabismus surgery for children and adults. His expertise includes evaluating and treating complex eye conditions in children, including those with special healthcare needs and developmental disabilities.
Karina Miller, DDS
Karina Miller, DDS
Karina Miller, DDS
Dr. Karina Miller is a board-certified pediatric dentist at Carilion Clinic and Program Director of its Pediatric Dentistry Residency Program. She specializes in providing comprehensive dental care for children, including those with complex medical conditions and special healthcare needs.
Amy Yeung, MD
Barrett Zlotoff MD, FAAD
Karina Miller, DDS
Dr. Amy Yeung is an Assistant Professor of Medicine at Harvard Medical School, a physician at Massachusetts General Hospital, and Co-Director of the MGH Porphyria Center. Her clinical work and research focus on rare genetic disorders involving severe photosensitivity, particularly erythropoietic protoporphyria (EPP), including the develop
Dr. Amy Yeung is an Assistant Professor of Medicine at Harvard Medical School, a physician at Massachusetts General Hospital, and Co-Director of the MGH Porphyria Center. Her clinical work and research focus on rare genetic disorders involving severe photosensitivity, particularly erythropoietic protoporphyria (EPP), including the development of treatments and improvements in patient quality of life.
Barrett Zlotoff MD, FAAD
Barrett Zlotoff MD, FAAD
Barrett Zlotoff MD, FAAD
Dr. Barrett Zlotoff is the EP Cawley Endowed Professor of Dermatology and Director of Pediatric Dermatology at the University of Virginia School of Medicine. A board-certified dermatologist specializing in pediatric dermatology and rare genetic skin disorders, he brings extensive clinical expertise in diagnosing and managing complex skin conditions.