The National Foundation for Ectodermal Dysplasias (NFED) is pleased to welcome five new volunteer members to our Patient Care Council (PCC) and Scientific Advisory Council (SAC). These dedicated medical and dental professionals bring expertise, commitment, and a shared passion for improving care, access, and outcomes for individuals and families affected by ectodermal dysplasias.
We are grateful for the time, expertise, and heart these volunteers bring. Each strengthens our ability to help our families. What’s wonderful about the doctors and dentists on these two councils is the direct help they provide to our families; whether that’s talking with them one-on-one at Family Conferences or answering specific questions families pose to NFED staff. These health care professionals make sure that the information the NFED provides is accurate. They truly are at the core of our education, research, support and treatment efforts and they donate their time to do it.
New Members of the PCC
The PCC helps develop and revise our educational materials. They also oversee the NFED’s professional education programs, Dental Treatment Centers, and the Treatment Assistance Program. Join us in welcoming these three dentists.
Kenneth S. Kurtz, D.D.S., FACP
Dr. Kenneth Kurtz is a board-certified prosthodontist and clinical professor and director of the Division of Maxillofacial Prosthetics at Stony Brook University School of Dental Medicine. He is also director of prosthodontic research at Montefiore Medical Center/Albert Einstein College of Medicine, where he has taught since 1998.
Dr. Kurtz is a fellow of the American College of Prosthodontists and the Royal College of Surgeons of Scotland and Ireland. He currently serves as president of the American College of Prosthodontists and has authored numerous peer-reviewed publications. His clinical practice is limited to prosthodontics and maxillofacial prosthetics in New Hyde Park, New York.
Dr. Kurtz shared what this opportunity with the NFED means to him.
“Serving on the NFED’s PCC is a privilege for me,” Dr. Kurtz said. “I have spent my prosthodontic career advocating and treating patients with congenital and acquired maxillofacial prosthetic treatment needs. It is tremendously satisfying to provide a sense of inclusion, especially for children born without teeth. The smile generated by a denture is priceless!”
Amit Punj, D.M.D., M.C.R., FACP
Dr. Amit Punj is a board-certified prosthodontist with more than 25 years of experience in dentistry. He serves as associate professor of dentistry and medicine at the Albert Einstein College of Medicine and is chief and program director of the Advanced Education in Prosthodontics Residency Program at Montefiore Medical Center in the Bronx, New York.
“Caring for individuals with ectodermal dysplasia is clinically complex, emotionally taxing, and often financially overwhelming for patients and families,” Dr. Punj said. “The limited availability of specialized resources can lead to uncertainty and frustration—an experience no family should navigate alone. This is where the NFED plays a vital role, offering education, support, advocacy, and connection between patients, caregivers, and clinicians. I am honored to volunteer with such an impactful and compassionate organization. It is deeply meaningful to me to contribute my expertise in prosthodontic rehabilitation to help improve the quality of life for this underserved community.”
Dr. Punj is actively involved in clinical research, professional education, and scientific publication. His work focuses on advancing prosthodontic care and education for diverse and medically complex patient populations.
Amanda Swanson, D.D.S.
Dr. Amanda Swanson is a pediatric dentist in private practice in Columbus, Ohio, and an adjunct faculty member teaching dental residents at Nationwide Children’s Hospital. If you have attended a Family Conference in the last few years, you may have met Dr. Swanson. She’s helped with dental evaluations and education.
Dr. Swanson spoke about the significance of this role in her work with families affected by ectodermal dysplasias.
“I am thrilled to be serving on the PCC to continue strengthening the resources and support available to this wonderful community. Working with families affected by ectodermal dysplasias has shaped the way that I practice and reinforced the importance of providing compassionate, evidence-based care. I am grateful for the opportunity to support the NFED community in these new and exciting ways.”
Dr. Swanson’s research has examined healthcare experiences and barriers to care among individuals with ectodermal dysplasias. She remains actively involved with the NFED through research, advocacy, and family-centered outreach and has spoken internationally on how families affected by rare diseases experience the healthcare system.
New Members of the SAC
The SAC has played a critical role at the NFED since our founding. It oversees the NFED’s research program, creates and edits educational materials, speaks at professional education meetings and Family Conference. Two new doctors bring leadership in research, genetics, and advocacy that will help guide NFED’s scientific direction.
April Adams, M.D., M.S., FACOG, FACMG
Dr. April Adams is an assistant professor at Baylor College of Medicine, serving in both the Department of Molecular and Human Genetics and the Department of Maternal-Fetal Medicine. She is board certified in obstetrics and gynecology, maternal-fetal medicine, and medical genetics. Dr. Adams also serves as program director for the Maternal-Fetal Medicine Fellowship and the combined Maternal-Fetal Medicine/Medical Genetics Fellowship programs.
“I joined the SAC because I am deeply committed to advancing the care and quality of life for individuals affected by rare diseases,” Dr. Adams said. As an obstetrician and reproductive geneticist, I have the privilege of supporting women living with rare genetic conditions. I am eager to contribute my expertise in reproductive and women’s health to offer a unique perspective and help enrich the SAC community’s discussions and initiatives.”
Her clinical practice focuses on maternal and fetal genetics, with an emphasis on caring for underserved populations. Her research includes the prenatal natural history of Down syndrome, social determinants of health in reproductive genetics, and genomic causes of stillbirth.
Pedro Alfonso Sanchez, M.D., MSCE, FAAP, FACMG
Dr. Pedro A. Sanchez is a physician–scientist and director of pediatric clinical genetics at Cedars-Sinai Medical Center in Los Angeles. He serves as an associate professor in the clinical scholar track at Guerin Children’s at Cedars-Sinai, UCLA School of Medicine, and as an adjunct professor at the Ostrow School of Dentistry at USC. He is double board certified in pediatrics and medical genetics
Dr. Sanchez has authored more than 90 scientific publications and co-authored a major medical textbook. He is a co-investigator on the Edelife Clinical Trial which is focused on developing a prental treatment for x-linked hypohidrotic ectodermal dysplasia and has actively advocated alongside NFED families in Washington, D.C. In 2025, the National Hispanic Medical Association named him Physician of the Year.
“I joined the NFED’s SAC because I believe deeply in the power of science, community, and advocacy coming together to create meaningful change,” Dr. Sanchez said. “NFED’s mission aligns with my goal of translating research into real-world impact for individuals and families affected by ectodermal dysplasias. By contributing to the scientific direction of the organization, I hope to help accelerate discoveries that improve care today and pave the way for future therapies. Most importantly, I want families to feel supported and hopeful about what lies ahead.”
Grateful for Their Expertise
NFED Executive Director Greg Klimovitz is excited to have these caring professionals on our team.
“We are grateful to Drs. Kurtz, Punj, Swanson, Sanchez, and Adams for joining the SAC and PCC,” Klimovitz said. “The NFED serves as a vital catalyst between our individuals and families and the experts in the spaces that lead to the breakthroughs in treatment and care they need most. I look forward to what our new members will bring to their respective councils and more so to the people who will benefit from their experience, wisdom, and genuine commitment to all those affected by ectodermal dysplasias.”
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