2018 PHACE Family Conference Speaker Biographies 

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KEYNOTE

Leslie B. Gordon, MD, PhD

Medical Director and Co-Founder, The Progeria Research Foundation

 

Leslie Gordon is a co-founder of The Progeria Research Foundation and serves as the organization’s volunteer Medical Director. Dr. Gordon is the Principal Investigator for ongoing PRF programs for Progeria, including the PRF International Progeria Registry, Medical and Research Database, Cell and Tissue Bank, and the Genetic Diagnostics Program. She has organized 8 National Institutes of Health-funded, international scientific meetings on Progeria. She is Professor of Pediatrics Research at Hasbro Children’s Hospital and the Alpert Medical School of Brown University in Providence, RI; Research Associate in Anesthesia at Harvard Medical School and Boston Children’s Hospital and Research Scientist at Women & Infants Hospital, all in Boston, MA. She was co-author on the 2003 gene discovery for Progeria, lead author of the 2012 Progeria treatment discovery study, and is co-chair of four Progeria clinical drug trials at Boston Children’s Hospital. She has received the March of Dimes Basil O’Connor Award, the American Heart Association Scientist Development Award, The Gerontological Society of America Award for contributions to Progeria, a National Institutes of Health Bench to Bedside Grant, and the Mother of the Year award from Working Mother Magazine. Dr. Gordon earned her bachelor’s degree in Zoology from the University of New Hampshire in Durham, New Hampshire. She went on to receive a master’s degree and medical and doctorate degrees from Brown University and the Brown University School of Medicine respectively, where she achieved top honors in the medical program.

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KEYNOTE

Scott Berns, MD, MPH, FAAP

President & CEO National Institute for Children's Health Quality (NICHQ)

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After serving for 14 years at the March of Dimes National Office, where he was the Senior Vice President of Chapter Programs and Deputy Medical Office, in October 2015 Dr. Berns became President and CEO of the NICHQ (National Institute for Children’s Health Quality), an independent, nonprofit organization working to improve children’s health.

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Scott is a board-certified pediatrician and pediatric emergency physician. He is a Clinical Professor of Pediatrics at the Warren Alpert Medical School of Brown University and Clinical Professor of Health Services, Policy and Practice at the Brown School of Public Health in Providence, RI. He earned a masters of public health from the Harvard School of Public Health with a concentration in health, policy and management, and completed a one-year White House Fellowship where he served as a Special Assistant to the U.S. Secretary of Transportation.

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Scott has received the Willis Wingert Award for excellence in research in pediatric emergency medicine from the American Academy of Pediatrics, a national award from the National Perinatal Association, a public health service award from the U.S. Department of Transportation, and the 2015 Impact Award from the White House Fellows Foundation & Association.

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Denise Adams, MD

Co-Director, Vascular Anomalies Center, Boston Children’s Hospital

Associate Professor, Harvard Medical School

 

Denise Adams started to care for patients with vascular anomalies in 1998 at Duke University where she started a vascular anomaly program during her fellowship in hematology oncology.   She worked for 13 years as the medical director of the Hemangioma and Vascular Malformation Center at Cincinnati Children’s Hospital Medical Center where she was the PI of two FDA studies using sirolimus to treat complicated vascular anomalies.  Recently, she was recruited to Boston Children’s Hospital to be one of the directors of their Vascular Anomalies Center.   Dr. Adams’ interests are in new agents for the medical treatment of vascular anomalies and prospective clinical research trials to improve the outcome of patients with these conditions.  Dr. Adams also currently serves on the PHACE Medical Advisory Board.

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Beth Drolet, MD

Medical Vice President, Ambulatory Services, Children's Hospital of Wisconsin

Medical Director, Birthmarks and Vascular Anomalies Program, Children's Hospital of Wisconsin

Professor, The Medical College of Wisconsin

Chair, PHACE Syndrome Community Medical Advisory Board

 

Dr. Drolet is a board certified dermatologist, and a fellowship trained pediatric dermatologist. She has a special interest in birthmarks and infantile hemangiomas. Dr. Drolet has created a collaborative research team to improve management of infants with hemangiomas and vascular anomalies. Her team has led several national initiatives to better define high risk vascular lesions and determine the best and safest treatment plans for these conditions. In 2004, she established the Birthmarks and Vascular Anomalies Center at CHW. This novel interdisciplinary team includes nine pediatric specialties which provide comprehensive care for patients with complex, multi-system vascular anomalies. This center has attained national recognition with greater than 50% of patients traveling from outside Southeastern Wisconsin. Dr. Drolet is a strong advocate for patients and families; she is committed to provide compassionate, timely, care for children with skin disease and to develop an innovative research center that will bring new knowledge and ultimately provide more effective care for her patients. Dr. Drolet is also the current chair of the PHACE Syndrome Community Medical Advisory Board.

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Maria C. Garzon, M.D.

Professor of Dermatology and Pediatrics at CUMC

Columbia University, N.Y.

 

Dr. Maria Garzon is a Professor of Dermatology and Pediatrics at Columbia University Medical Center/Morgan Stanley Children’s Hospital-NY Presbyterian. She is a Co-Founder and Co-Director of their Multidisciplinary Vascular Anomalies Clinic and an internationally recognized leader in Pediatric Dermatology. Dr. Garzon is one of the founding members and former president of the Hemangioma Investigator Group (HIG) and has served as president of the Society for Pediatric Dermatology and NY Dermatological Society. She is an expert in vascular anomalies and a member of the Scientific Committee of the International Society for the Study of Vascular Anomalies (ISSVA). She has served as the Chair of the Mentorship Committee of the Society for Pediatric Dermatology and is on the PHACE Syndrome Community Medical Advisory Board.  Dr. Garzon remains dedicated to providing outstanding clinical care, developing new and innovative clinical and translational research projects, and educating and training the future leaders in the specialty. 

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Geoffrey Heyer, MD

Pediatric Neurologist, Nationwide Children’s Hospital

Associate Professor, The Ohio State University College of Medicine

 

Geoffrey L. Heyer, MD, is an attending pediatric neurologist at Nationwide Children’s and Associate Professor of Clinical Pediatrics at The Ohio State University College of Medicine. His clinical interests include PHACE syndrome and the management of headache, concussion, and orthostatic intolerance in adolescents. Dr. Heyer is also the co-author of the book “Pediatric Stroke and Cerebrovascular Disorders and is also a current member of the PHACE Syndrome Community Medical Advisory Board.

 

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Dawn H Siegel, MD

Associate Professor, The Medical College of Wisconsin

 

Dr. Siegel is a founding member and scientific co-chairman for the Pediatric Dermatology Research Alliance (PeDRA) to promote and discover better treatments for the pediatric dermatology conditions through research. In addition to practice of common pediatric dermatology conditions, Dr. Siegel also has an expertise in genetic skin syndromes. She is co‐director of the Neurofibromatosis and RASopathy clinic at Children’s Hospital of Wisconsin and she works on the Medical Advisory Committee for the Costello Syndrome Family Network. Through her research, Dr. Siegel has spent the last several years determining the features and cause of “PHACE syndrome”. Dr. Siegel also serves as Director of PHACE Syndrome International Clinical Registry & Genetic Repository and is a current member of the PHACE  Syndrome Community Medical Advisory Board.