The National Foundation for Ectodermal Dysplasias (NFED) is proud to announce the addition of new leadership experts to our Board of Directors, Patient Care Council, and Scientific Advisory Council. These members bring a wealth of knowledge, critical experience, and personal insights to the foundation.
Their unique perspectives will play a pivotal role in advancing our mission to support and serve individuals and families affected by ectodermal dysplasias. With their guidance, we are confident in our ability to drive meaningful progress in education, support, research, and advocacy–ensuring a brighter future for the ectodermal dysplasias community.
Advancing Dental Care
Eric Mediavilla, D.D.S., F.A.G.D.
Dr. Mediavilla will join the NFED’s Patient Care Council with a depth of expertise in dental care. He currently serves as the Associate Dean for Admissions, Student, and Alumni Affairs, an Associate Clinical Professor in the Department of Restorative Dentistry, and the Director of the Adolescent Dental Clinic at the University of Colorado School of Dental Medicine.
With an educational journey that includes Colorado State University, Mesa Community College, and Loyola Marymount University—where he balanced academics with a baseball career that led to five years in the minor leagues—Dr. Mediavilla’s path to dentistry is as inspiring as it is unique. He earned his dental degree from the University of Colorado School of Dental Medicine and completed a general practice residency at University Hospital in Denver.
A dedicated advocate for advancing patient care, Dr. Mediavilla is a member of numerous professional organizations, including the American Dental Association, the Colorado Dental Association, the American Dental Education Association, Omicron Kappa Upsilon Dental Honor Society, and the Pierre Fauchard Academy. As a Fellow of the Academy of General Dentistry, he brings extensive expertise and a compassionate approach to patient care. When he’s not working, you’ll find Dr. Mediavilla spending time with his wife and three children.
Promoting Maternal and Fetal Genetics Research
April Adams, M.D., M.S., F.A.C.O.G., F.A.C.M.G
Dr. April Adams will join the NFED’s Scientific Advisory Council with an extensive background. She currently serves as an Assistant Professor at Baylor College of Medicine, holding dual appointments in the Department of Molecular and Human Genetics and the Department of Maternal-Fetal Medicine. Dr. Adams is a board-certified expert in obstetrics and gynecology, maternal-fetal medicine, and medical genetics. She also directs the Maternal-Fetal Medicine Fellowship and the combined Maternal-Fetal Medicine/Medical Genetics Fellowship programs.
She has a clinical focus and a deep commitment to serving underserved populations. Because of that, Dr. Adams brings a wealth of expertise to the NFED in maternal and fetal genetics. Her research spans prenatal Down syndrome, the role of social determinants of health in reproductive genetics, and the genomic causes of stillbirth. On top of her impressive experience, Dr. Adams also enjoys family time, outdoor adventures, and reading science fiction.
Providing Nonprofit Service and Personal Experience
Jeanne Wang
Jeanne Wang is a mother to a son affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. She has worked on a variety of non-profit boards specializing in fundraising and marketing. So, Jeanne has vital experience to bring to the NFED’s Board of Directors. She knows first hand the power of connecting affected families with one another. Since joining the Foundation in 2006, Jeanne has been a consistent advocate of the NFED. She feels it is time to give back to the community which has given her hope and strength over the years. She joins us from the Washington D.C. area where she lives with her husband, Gary. They enjoy traveling the world and visiting their adult children.
Soren Roe
Soren Roe was is affected by an unknown type of ectodermal dysplasia, as does his father and sister. His personal perspective will bring fresh insights to the NFED’s Board of Directors. Since 2022, he has served as a Capitol Hill advocate, organized walks, and met with members of Congress to lobby for the Ensuring Lasting Smiles Act (ELSA). Soren is passionate about the NFED’s mission and is excited to join the Board of Directors.
He aims to strengthen the community for young advocates and amplify their voices within the organization. Originally, Soren was from Minnesota but now resides in New York City. He graduated from Saint John’s University and has been with Kearney, a management consulting firm, since 2021.
Bill Wilkinson
Bill Wilkinson most recently served as the Chief Operating Officer of the United Nations Joint Staff Pension Fund. It is one of the largest global pension funds supporting the United Nations and its member organizations. He brings a wealth of experience from his distinguished career in the nonprofit sector to the NFED’s Board of Directors. His dedication to non-profit work is further demonstrated by his time at TIAA, another leading nonprofit pension fund.
Bill lives in Massapequa, New York, with his wife, Roma, and daughter, Samantha. His other daughter, Allison, resides in Maryland. He’s a long-time friend of the NFED. Bill is thrilled to join the Board, where his expertise and passion for service will play a vital role in advancing the organization’s mission and supporting the ectodermal dysplasias community. Bill has also served on the NFED’s Halloween Bash Committee since its inception.
Volunteers are key members of our team. We are grateful to each of these talented and devoted individuals for agreeing to share their talents to help those we serve. Join us in welcoming the new board and council members!