CME Speakers
Rare Disease CME
Nicholas Ah Mew, MD
Nicholas Ah Mew, MD
Director, Inherited Metabolic Disorders Program
Nicholas Ah Mew, MD, is Director of the Inherited Metabolic Disorders Program at Children’s National Hospital and is Associate Professor of Pediatrics at George Washington University. He is a board-certified clinical geneticist in Washington, DC, and a clinical biochemical geneticist whose primary research interests include urea cycle disorders, organic acidemias, and other disorders of ammonia metabolism. Dr. Ah Mew is the principal investigator (PI) or co-PI of several projects funded through the National Institutes of Health and Patient-Centered Outcomes Research Institute. Furthermore, he has authored multiple publications and book chapters on genetics and metabolism and has lectured internationally on these topics.
Sarah Viall, MSN
Sarah Viall, MSN
Program Director, Clinical Metabolic Genetics
Sarah Viall, MSN, graduated from Yale University School of Nursing in 2012 and started her career in the Division of Genetics & Metabolism at Children's National Hospital. She specialized in the follow-up of infants and children with conditions detected by newborn screening. Sarah was the Division's Director of Newborn Screening until April 2020, when Sarah moved to Portland, Oregon to serve as the Program Director for Clinical Metabolic Genetics at Oregon Health and Science University (OSHU). In addition, she is a Nurse Educator for the Northwest Newborn Screening Program, and she helps to manage the lysosomal storage disorder program at OSHU. Sarah’s main areas of interest are newborn screening, lysosomal storage disorders, and phenylketonuria.
Debra Regier, MD, PhD
Debra Regier, MD, PhD
Medical Director
Debra Regier, MD, PhD, is the Medical Director and Director of Genetic and Genomic Education at Children's National and Program Director for the Children’s National medical genetics training program. Her patient population includes general genetics, palliative care/genetics, and metabolic diseases. Due to her drive to improve care for patients with Rare Diseases, she has worked to advance education in multiple facets. She has served as the Education Coordinator and Principal Investigator for the Rare Disease Clinical Research Scholar's Program. She serves on the Board of Directors for the Society of Inherited Metabolic Disorders. In her free time, she serves as the genetics and rare disease expert for the Make-A-Wish national medical advisory council.
Maura Carroll, MD
Maura Carroll, MD
Primary Care Pediatrician
Maura Carroll, MD, is a primary care pediatrician working in Ashburn and Chantilly, Virginia. Dr. Carroll currently works at Ashburn Pediatrics, and she has completed her residency at Georgetown University Hospital. She is interested in genetics and neurology, caring for many patients with complex medical problems. Dr. Carroll has a strong belief in the concept of the “medical home” and tries to serve the community’s most complicated patients and families by providing many aspects of their care. She works with very supportive partners who have been willing to allow the office to stock specialty formulas, feeding tube equipment and some rehab equipment to keep their patients well-supplied. In her free time, Dr. Carroll enjoys being with her extended family, knitting, quilting and gardening.
Kimberly Chapman, MD, PhD, FAAP, FABIM, FABMGG
Kimberly Chapman, MD, PhD, FAAP, FABIM, FABMGG
Attending Physician, Genetics and Metabolism
Kimberly Chapman, MD, PhD, FAAP, FABIM, FABMGG, is an attending physician in Genetics and Metabolism at Children’s National (Children’s National Rare Disease Institute) and an Assistant Professor of Pediatrics and Integrated Systems Biology at George Washington Medical School in Washington, DC. In addition, she is the Director for Adult Medicine at Children’s National Rare Disease Institute. Moreover, Dr. Chapman is the Co-Director of the Adult Mitochondrial Program at Children’s National. She specializes in taking care of all ages of individuals with metabolic and genetic disorders. Dr. Chapman’s clinic interests focus on mitochondrial diseases, metabolic disorders, and cardio-genetic diseases while her research interests are several metabolic pathways and protein complexes within them.
Danielle Starin, MS, RD, LD
Danielle Starin, MS, RD, LD
Research Nutritionist & Metabolic Dietitian
Danielle Starin, MS, RD, LD, is a research nutritionist and metabolic dietitian in the Rare Disease Institute at Children’s National Hospital in Washington, DC. She holds a bachelor’s degree in Cell Biology and Molecular Genetics and a master’s degree in Nutrition and Food Science, both from the University of Maryland, College Park. Danielle completed her dietetic internship at the National Institutes of Health in Bethesda, Maryland. In addition to her clinical work, she is an active member of Genetic Metabolic Dietitians International. Danielle has served on advisory boards and as a consultant for multiple rare disease pharmaceutical and formula companies. Furthermore, she participates in multiple research studies on various inborn errors of metabolism.Eduardo Fox, MD
Eduardo Fox, MD
Pediatrician
Eduardo Fox, MD, is a pediatrician at Children’s National Shaw Metro. He works in the Goldberg Center for Community Pediatric Health and serves as Medical Director for the Pediatric Health Network. Dr. Fox holds an academic position as Clinical Assistant Professor of Pediatrics at George Washington University School of Medicine & Health Sciences. His clinical and research interests include immigrant health, quality improvement, pediatric asthma care, and children with medical complexity. Dr. Fox has also assisted in the expansion of primary care telemedicine services, participated in and led practice quality improvement efforts, and contributed to medical home certification efforts. Prior to joining Children’s National, he was a pediatrician at Capital Area Pediatrics in Virginia.
Leah Fleming, MD
Leah Fleming, MD
Clinical Genetics and Medical Biochemical Genetics
Leah Fleming, MD, specializes in clinical genetics and medical biochemical genetics. She enjoys caring for children and adults with a wide range of genetics conditions and values the longitudinal relationships that come from following her patients with inborn errors of metabolism and other rare conditions over the years after their diagnosis. She works with a multidisciplinary team of geneticists, genetic counselors, nurses, and dieticians at the Idaho Elks Children’s Pavilion where is she can collaborate closely with other pediatric subspecialists. In her spare time, she enjoys teaching genetic counseling students at Boise State University, spending time with her friends, family and her dogs, and enjoying the beauty of Idaho.
Deborah Bilder, MD
Deborah Bilder, MD
Professor, Department of Psychiatry, Division of Child & Adolescent Psychiatry
Deborah Bilder, MD, is a Professor in the Department of Psychiatry in the Division of Child & Adolescent Psychiatry at the University of Utah. She holds adjunct appointments in the departments of Pediatrics and Educational Psychology. Dr. Bilder completed the triple board residency program (Pediatrics, General Psychiatry, Child & Adolescent Psychiatry) at the University of Utah and maintains board certification in all three specialties. She is the Principal Investigator for the Utah Registry of Autism and Developmental Disabilities and co-Principal Investigator for the CDC’s Autism and Developmental Disabilities Monitoring Network Utah site. Her clinical expertise is in psychiatric assessment and treatment for individuals across the lifespan with severe neurodevelopmental disabilities.Jamie Fraser, MD, PhD, FACMG
Jamie Fraser, MD, PhD, FACMG
Director, Myelin Disorders Clinic
Jamie Fraser, MD, PhD, FACMG, completed her medical and graduate training at the Medical University of South Carolina, where she studied neonatal brain injury in humans and in vivo models. Then, Dr. Fraser completed her pediatrics training at Children’s National Hospital in 2013 and medical genetics training at the National Institutes of Health in 2016. Currently, Dr. Fraser is the director of the Myelin Disorders clinic at Children's National. Her clinical and research interests focus on metabolic disorders, neurometabolic diseases, neuroprotection, leukodystrophies and leukoencephalopathies, and the development of new therapies to treat rare, complex disorders. Dr. Fraser’s goal is to better understand the pathogenesis of these diseases and target mechanisms to ultimately treat patients.
Christine Maccia, MS, CGC
Christine Maccia, MS, CGC
Genetic Counselor
Christine Maccia, MS, CGC, is currently a genetic counselor in the Rare Disease Institute at Children’s National Medical Center. She is also a part of the team for the Lysosomal Storage Disorders Program at Children’s National Medical Center. She sees general genetics patients but has a special interest in metabolic and lysosomal storage disorders. Additionally, Christine is interested in clinical research and trials, genetic therapies, and reproductive genetics. She is a recent graduate of the University of South Carolina Genetic Counseling Program.Jenifer Jones-Dees, MD
Jenifer Jones-Dees, MD
Independent Pediatrician
Jenifer Jones-Dees, MD, has joined the team at IMA Healthcare to be an Independent Pediatrician alongside her pediatric practice in the Midwest. She has a special interest in asthma and allergy, behavioral pediatrics, and care of the child with complex medical needs. In addition to her pediatric practice, Dr. Jones-Dees is the medical director for Infinite Skin Medical Spa and certified in adult hormone replacement therapy. She holds certification for several aesthetic procedures including laser skin resurfacing, laser hair removal and injections for both Botox and fillers. Furthermore, Dr. Jones-Dees supports the state Pediatric chapter by providing leadership with the roles of State Immunization Champion and State Early Hearing Detection and Intervention Champion.
Carla Cheatham, MD, MA, PhD
Carla Cheatham, MD, MA, PhD
Assistant Professor
Carla Cheatham, MD, MA, PhD, began her career in psychosocial services before working 10 years as an interfaith healthcare chaplain and bereavement coordinator. Dr. Cheatham is a national keynote speaker and consultant focusing on emotionally intelligent and resilient professionals and organizations. Moreover, she is a member of NHPCO’s Trauma-Informed End of Life Care Work Group, former Chair of NHPCOs Ethics Advisory Council, Adjunct Professor at Seminary of the Southwest, and Assistant Professor for University of Maryland’s MS in Palliative Care. Dr. Cheatham publishes books and videos about healthy leadership and organizations, resilience, communication, trauma-informed care, post-traumatic growth, grief, service recovery, emotionally competent professionals and teams, and more.
FOP Series
Michelle Davis
Michelle Davis
Executive Director
Michelle Davis (Kansas City, MO) is the Executive Director of International FOP Association (IFOPA). Most of her career has been spent working in the nonprofit sector, which included training and consulting with nonprofit staff, boards of directors and volunteers. In that role, Ms. Davis was exposed to many deserving causes, but her passion is working with patient advocacy organizations, including the Polycystic Kidney Disease (PKD) Foundation. While at the PKD Foundation, she became acquainted with the rare disease community which is what drew her to IFOPA. At IFOPA, Ms. Davis leads a team of six staff and partners with the Board of Directors to execute the organization’s strategic plan..jpg)
Edward Hsiao, MD, PhD
Edward Hsiao, MD, PhD
Professor, Division of Endocrinology and Metabolism
Edward Hsiao, MD, PhD, is a Full Professor and Director of the UCSF Metabolic Bone Clinic at the University of California, San Francisco, CA. Dr. Hasio’s research is driven by a bedside-to-bench-back to-bedside approach, using clinical observations and patient samples to inspire the research with the long-term goal of improving the care of patients with all types of skeletal disorders including Fibrodysplasia Ossificans Progressiva (FOP). His laboratory uses a combination of human stem cell and mouse models to study how genetics and hormone signaling contributes to the normal formation of key skeletal tissues such as bone, cartilage, muscle, and fat. Furthermore, Dr. Hasio is a site investigator in interventional trials for an experimental compound to block heterotopic ossification in FOP.
Lisa Gillooly
Lisa Gillooly
Parent of a child with Fibrodysplasia Ossificans Progressiva
Lisa Gillooly is a caregiver for her daughter Sara, 34, with Fibro Dysplasia Ossificans Progressiva (FOP). At seven months of age, Sara was diagnosed with FOP, and the family was told Sara had a short life expectancy. However, the family learned Sara could live a long life, so Lisa became Sara’s advocate. She started with getting Sara an equal education despite her physical disabilities. Also, Lisa learned to navigate the insurance system to acquire all the necessary medical equipment Sara needed. Lisa took her self-taught skills and shared them with many other FOP families. Lisa is a member of the Mothers FOP Group and helps other moms navigate raising patients with FOP. Lisa hopes reaching out in any way helps other families navigate this complex life even just a little bit easier.
Hope Newport, MA, CCLS
Hope Newport, MA, CCLS
Family Services Manager
Hope began her role as the International FOP Association (IFOPA) Family Services Manager in April 2018. She holds a Master's Degree in Human Development and Family Studies from the University of Missouri and is a Certified Child Life Specialist. Hope has over a decade of experience working with families dealing with chronic conditions from her tenure at The Hole in the Wall Gang Camp and the Down Syndrome Guild of Greater Kansas City. During her time at the Camp, Hope developed the CampOut program to provide families with camaraderie and normalizing activities of summer camp. In her current role as Family Services Manager with IFOPA, she collaborates with subject-matter experts and families affected by FOP to create programs, services, and educational opportunities for the FOP community.
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HIV BIPOC
Sheldon Fields, PhD, RN, FNP-BC, AACRN, FAANP, FNAP, FAAN
Sheldon Fields, PhD, RN, FNP-BC, AACRN, FAANP, FNAP, FAAN
Associate Dean for Equity and Inclusion
Dr. Sheldon Fields is an HIV-prevention research scientist who has maintained a primary focus on HIV prevention and treatment among underserved populations. He completed his PhD in nursing science from Pennsylvania State University and his post-doctoral work in the Center for AIDS Prevention Studies at the University of California, San Francisco. A lifetime member of the National Black Nurses Association, he currently serves as its first vice president. In 2020, Dr. Fields was appointed as the inaugural associate dean for equity and inclusion in the Ross and Carol Nese College of Nursing and received the Towers Pinnacle Award from the American Association of Nurse Practitioners (AANP). He holds fellowship status in AANP, the National Academies of Practice, and the American Academy of Nursing.
Onyema Ogbuagu, MD, FACP, FIDSA
Onyema Ogbuagu, MD, FACP, FIDSA
Associate Professor of Medicine
Onyema Ogbuagu, MBBCh, FACP, FIDSA is an associate professor of medicine in the clinician-educator track and director of the HIV Clinical Trials program within the Yale AIDS Program in the Section of Infectious Diseases at Yale School of Medicine. Dr. Ogbuagu’s clinical responsibilities include educating and training medical students, residents, and infectious-diseases fellows in inpatient and outpatient settings. He also continues to mentor medical residents and junior faculty in Rwanda in quality improvement and clinical research projects that are locally relevant and address important infectious-disease problems, particularly the HIV/AIDS epidemic and antimicrobial resistance.
Mamta Jain, MD, MPH, FIDSA
Mamta Jain, MD, MPH, FIDSA
Professor Infectious Diseases
Mamta K. Jain, MD, MPH, FIDSA is a Professor in the Department of Internal Medicine at UT Southwestern Medical Center. She specializes in infectious diseases and conducts clinical trials to evaluate new therapies for HIV, hepatitis C, influenza, and now COVID-19. Her research focuses on improving clinical outcomes for those with HIV and viral hepatitis, and she has received significant grant support for her work. Dr. Jain is a fellow of the Infectious Diseases Society of America and is on the Board of Directors for the HIV Medicine Association.
Proteinuria
Jürgen Floege, MD
Jürgen Floege, MD
Head of the Division, Nephrology and Immunology
Jürgen Floege, MD, is head of the Division of Nephrology and Immunology at the University of Aachen, Germany since 1999. Dr. Floege is a former executive council member of the International Society of Nephrology (ISN), the European Renal Association (ERA-EDTA), and currently coordinates the KDIGO glomerular disease management guidelines. His research interests encompass both basic research like studies underlying progression of renal disease in particular renal fibrosis as well as clinical research in immune-mediated renal disease, bone and mineral disorders (CKD-MBD), and cardiovascular disease in uremic patients. Furthermore, Dr. Floege is a Distinguished Fellow of the ERA-EDTA and recipient of the 2018 ERA-EDTA Award for Outstanding Clinical Contributions to Nephrology.
Michelle O’Shaughnessy, MD
Michelle O’Shaughnessy, MD
Consultant Nephrologist
Michelle O’Shaughnessy, MB BCh BAO MS MD, is a Consultant Nephrologist at University Hospital Galway, Ireland. She is a Fellow of the American Society of Nephrology, Fellow of the Royal College of Physicians of Ireland, and member of the KDIGO Executive Committee. She has a clinical and academic subspecialist interest in glomerular diseases and has published over 50 peer-reviewed scientific manuscripts predominantly focusing on glomerular disease epidemiology and clinical outcomes. Current research funding from the Health Research Board (Ireland) and Irish Kidney Association supports research examining patient-reported outcomes in patients with glomerular disease. She is also establishing University Hospital Galway as a site for clinical trials in glomerular diseases, including IgA nephropathy.
Food Allergy
Edwin Kim, MD, MS
Edwin Kim, MD, MS
Associate Professor of Pediatrics
Edwin Kim, MD, MS is an associate professor of pediatrics at the University of North Carolina (UNC) School of Medicine and chief of the division of pediatric allergy and immunology. He is director of the UNC Food Allergy Initiative research group, which focuses on multiple aspects of food immunotherapy including safety and tolerability of immunotherapy, varying levels of clinical desensitization, and immune mechanisms involved in successful treatment. Dr. Kim is also interested in research that focuses on the development of novel therapeutics for food allergy. As director, his goal is to recruit and train the next generation of leaders in allergy and immunology through strong clinical training and productive research opportunities.Kristie Herring
Kristie Herring
Caregiver
Ruchi Gupta, MD, MPH
Ruchi Gupta, MD, MPH
Professor of Pediatrics and Medicine
Ruchi Gupta, MD, MPH is a professor of pediatrics and medicine at Northwestern University Feinberg School of Medicine and a clinical attending at the Ann & Robert H. Lurie Children’s Hospital of Chicago. With more than 20 years of experience as a board-certified pediatrician and health researcher, Dr. Gupta is the founding director of the Center for Food Allergy & Asthma Research (CFAAR). She is world-renowned for her groundbreaking research in the areas of food allergy and asthma epidemiology, most notably for her research on the prevalence of pediatric and adult food allergy in the United States. She has also significantly contributed to academic research in the areas of food-allergy prevention, socioeconomic disparities in care, and daily management of these conditions.
Visual Outcomes in nAMD and DME
Durga Borkar, MD
Durga Borkar, MD
Assistant Professor of Ophthalmology
Durga Borkar, MD is a board-certified, fellowship-trained adult vitreoretinal surgeon. She is an assistant professor of ophthalmology and assistant professor of population health sciences in Duke University’s Ophthalmology Department. She specializes in diabetic retinopathy, macular degeneration, retinal vascular occlusion, macular edema, macular holes, epiretinal membranes, vitreomacular traction, secondary intraocular lens placement, and complex retinal detachments, among others. Dr. Borkar’s academic interests include clinical-outcomes research using large administrative datasets. She has presented her work at numerous national and international retina meetings and is the recipient of several awards for excellence in research and clinical care, including the Heed Foundation Fellowship, the Society of Heed Fellows Award, and the AAO Advocacy Ambassador Award.
Eritrea Mussa
Eritrea Mussa
Person living with Diabetes and Diabetic Macular Edema
Eritrea Mussa has lived with type 1 diabetes for 23 years and has worked in the diabetes space as an advocate for most of her adult life. In 2020, a diabetic macular edema diagnosis taught her that there are many people living successfully with diabetes complications. She has always carried a strong love of travel and culture. Both of her parents are immigrants to America and a big part of her life has been spent traveling to visit family around the world. In her free time, Eritrea co-hosts DiabeticsDoingThings (https://diabeticsdoingthings.com/podcast), a podcast that focuses on telling the amazing stories of people living with diabetes. Eritrea enjoys reading, napping, and, above all, laughing as much as possible. She resides in Dallas with her dog..jpg)
Rishi P. Singh, MD
Rishi P. Singh, MD
Professor of Ophthalmology
Rishi Singh, MD, is a staff surgeon at the Cleveland Clinic Florida, Professor of Ophthalmology at the Lerner College of Medicine, and President of Cleveland Clinic Martin Hospitals in Stuart, FL. He specializes in the treatment of medical and surgical retinal disease such as diabetic retinopathy and age-related macular degeneration. Dr. Singh has authored more than 200 peer reviewed publications and serves as the principal investigator of numerous clinical trials advancing the treatment of retinal disease. Dr. Singh is the former president on the Retina World Congress and is on the board of the American Society of Retina Specialists. Dr. Singh has been honored with several research recognitions such as the Alpha Omega Alpha Research Award.
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All Speakers
Nicholas Ah Mew, MD
Nicholas Ah Mew, MD
Director, Inherited Metabolic Disorders Program
Nicholas Ah Mew, MD, is Director of the Inherited Metabolic Disorders Program at Children’s National Hospital and is Associate Professor of Pediatrics at George Washington University. He is a board-certified clinical geneticist in Washington, DC, and a clinical biochemical geneticist whose primary research interests include urea cycle disorders, organic acidemias, and other disorders of ammonia metabolism. Dr. Ah Mew is the principal investigator (PI) or co-PI of several projects funded through the National Institutes of Health and Patient-Centered Outcomes Research Institute. Furthermore, he has authored multiple publications and book chapters on genetics and metabolism and has lectured internationally on these topics.Sarah Viall, MSN
Sarah Viall, MSN
Program Director, Clinical Metabolic Genetics
Sarah Viall, MSN, graduated from Yale University School of Nursing in 2012 and started her career in the Division of Genetics & Metabolism at Children's National Hospital. She specialized in the follow-up of infants and children with conditions detected by newborn screening. Sarah was the Division's Director of Newborn Screening until April 2020, when Sarah moved to Portland, Oregon to serve as the Program Director for Clinical Metabolic Genetics at Oregon Health and Science University (OSHU). In addition, she is a Nurse Educator for the Northwest Newborn Screening Program, and she helps to manage the lysosomal storage disorder program at OSHU. Sarah’s main areas of interest are newborn screening, lysosomal storage disorders, and phenylketonuria.Debra Regier, MD, PhD
Debra Regier, MD, PhD
Medical Director
Debra Regier, MD, PhD, is the Medical Director and Director of Genetic and Genomic Education at Children's National and Program Director for the Children’s National medical genetics training program. Her patient population includes general genetics, palliative care/genetics, and metabolic diseases. Due to her drive to improve care for patients with Rare Diseases, she has worked to advance education in multiple facets. She has served as the Education Coordinator and Principal Investigator for the Rare Disease Clinical Research Scholar's Program. She serves on the Board of Directors for the Society of Inherited Metabolic Disorders. In her free time, she serves as the genetics and rare disease expert for the Make-A-Wish national medical advisory council.Maura Carroll, MD
Maura Carroll, MD
Primary Care Pediatrician
Maura Carroll, MD, is a primary care pediatrician working in Ashburn and Chantilly, Virginia. Dr. Carroll currently works at Ashburn Pediatrics, and she has completed her residency at Georgetown University Hospital. She is interested in genetics and neurology, caring for many patients with complex medical problems. Dr. Carroll has a strong belief in the concept of the “medical home” and tries to serve the community’s most complicated patients and families by providing many aspects of their care. She works with very supportive partners who have been willing to allow the office to stock specialty formulas, feeding tube equipment and some rehab equipment to keep their patients well-supplied. In her free time, Dr. Carroll enjoys being with her extended family, knitting, quilting and gardening.Kimberly Chapman, MD, PhD, FAAP, FABIM, FABMGG
Kimberly Chapman, MD, PhD, FAAP, FABIM, FABMGG
Attending Physician, Genetics and Metabolism
Kimberly Chapman, MD, PhD, FAAP, FABIM, FABMGG, is an attending physician in Genetics and Metabolism at Children’s National (Children’s National Rare Disease Institute) and an Assistant Professor of Pediatrics and Integrated Systems Biology at George Washington Medical School in Washington, DC. In addition, she is the Director for Adult Medicine at Children’s National Rare Disease Institute. Moreover, Dr. Chapman is the Co-Director of the Adult Mitochondrial Program at Children’s National. She specializes in taking care of all ages of individuals with metabolic and genetic disorders. Dr. Chapman’s clinic interests focus on mitochondrial diseases, metabolic disorders, and cardio-genetic diseases while her research interests are several metabolic pathways and protein complexes within them.Danielle Starin, MS, RD, LD
Danielle Starin, MS, RD, LD
Research Nutritionist & Metabolic Dietitian
Danielle Starin, MS, RD, LD, is a research nutritionist and metabolic dietitian in the Rare Disease Institute at Children’s National Hospital in Washington, DC. She holds a bachelor’s degree in Cell Biology and Molecular Genetics and a master’s degree in Nutrition and Food Science, both from the University of Maryland, College Park. Danielle completed her dietetic internship at the National Institutes of Health in Bethesda, Maryland. In addition to her clinical work, she is an active member of Genetic Metabolic Dietitians International. Danielle has served on advisory boards and as a consultant for multiple rare disease pharmaceutical and formula companies. Furthermore, she participates in multiple research studies on various inborn errors of metabolism.Eduardo Fox, MD
Eduardo Fox, MD
Pediatrician
Eduardo Fox, MD, is a pediatrician at Children’s National Shaw Metro. He works in the Goldberg Center for Community Pediatric Health and serves as Medical Director for the Pediatric Health Network. Dr. Fox holds an academic position as Clinical Assistant Professor of Pediatrics at George Washington University School of Medicine & Health Sciences. His clinical and research interests include immigrant health, quality improvement, pediatric asthma care, and children with medical complexity. Dr. Fox has also assisted in the expansion of primary care telemedicine services, participated in and led practice quality improvement efforts, and contributed to medical home certification efforts. Prior to joining Children’s National, he was a pediatrician at Capital Area Pediatrics in Virginia.Leah Fleming, MD
Leah Fleming, MD
Clinical Genetics and Medical Biochemical Genetics
Leah Fleming, MD, specializes in clinical genetics and medical biochemical genetics. She enjoys caring for children and adults with a wide range of genetics conditions and values the longitudinal relationships that come from following her patients with inborn errors of metabolism and other rare conditions over the years after their diagnosis. She works with a multidisciplinary team of geneticists, genetic counselors, nurses, and dieticians at the Idaho Elks Children’s Pavilion where is she can collaborate closely with other pediatric subspecialists. In her spare time, she enjoys teaching genetic counseling students at Boise State University, spending time with her friends, family and her dogs, and enjoying the beauty of Idaho.Deborah Bilder, MD
Deborah Bilder, MD
Professor, Department of Psychiatry, Division of Child & Adolescent Psychiatry
Deborah Bilder, MD, is a Professor in the Department of Psychiatry in the Division of Child & Adolescent Psychiatry at the University of Utah. She holds adjunct appointments in the departments of Pediatrics and Educational Psychology. Dr. Bilder completed the triple board residency program (Pediatrics, General Psychiatry, Child & Adolescent Psychiatry) at the University of Utah and maintains board certification in all three specialties. She is the Principal Investigator for the Utah Registry of Autism and Developmental Disabilities and co-Principal Investigator for the CDC’s Autism and Developmental Disabilities Monitoring Network Utah site. Her clinical expertise is in psychiatric assessment and treatment for individuals across the lifespan with severe neurodevelopmental disabilities.Jamie Fraser, MD, PhD, FACMG
Jamie Fraser, MD, PhD, FACMG
Director, Myelin Disorders Clinic
Jamie Fraser, MD, PhD, FACMG, completed her medical and graduate training at the Medical University of South Carolina, where she studied neonatal brain injury in humans and in vivo models. Then, Dr. Fraser completed her pediatrics training at Children’s National Hospital in 2013 and medical genetics training at the National Institutes of Health in 2016. Currently, Dr. Fraser is the director of the Myelin Disorders clinic at Children's National. Her clinical and research interests focus on metabolic disorders, neurometabolic diseases, neuroprotection, leukodystrophies and leukoencephalopathies, and the development of new therapies to treat rare, complex disorders. Dr. Fraser’s goal is to better understand the pathogenesis of these diseases and target mechanisms to ultimately treat patients.Christine Maccia, MS, CGC
Christine Maccia, MS, CGC
Genetic Counselor
Christine Maccia, MS, CGC, is currently a genetic counselor in the Rare Disease Institute at Children’s National Medical Center. She is also a part of the team for the Lysosomal Storage Disorders Program at Children’s National Medical Center. She sees general genetics patients but has a special interest in metabolic and lysosomal storage disorders. Additionally, Christine is interested in clinical research and trials, genetic therapies, and reproductive genetics. She is a recent graduate of the University of South Carolina Genetic Counseling Program.Jenifer Jones-Dees, MD
Jenifer Jones-Dees, MD
Independent Pediatrician
Jenifer Jones-Dees, MD, has joined the team at IMA Healthcare to be an Independent Pediatrician alongside her pediatric practice in the Midwest. She has a special interest in asthma and allergy, behavioral pediatrics, and care of the child with complex medical needs. In addition to her pediatric practice, Dr. Jones-Dees is the medical director for Infinite Skin Medical Spa and certified in adult hormone replacement therapy. She holds certification for several aesthetic procedures including laser skin resurfacing, laser hair removal and injections for both Botox and fillers. Furthermore, Dr. Jones-Dees supports the state Pediatric chapter by providing leadership with the roles of State Immunization Champion and State Early Hearing Detection and Intervention Champion.Carla Cheatham, MD, MA, PhD
Carla Cheatham, MD, MA, PhD
Assistant Professor
Carla Cheatham, MD, MA, PhD, began her career in psychosocial services before working 10 years as an interfaith healthcare chaplain and bereavement coordinator. Dr. Cheatham is a national keynote speaker and consultant focusing on emotionally intelligent and resilient professionals and organizations. Moreover, she is a member of NHPCO’s Trauma-Informed End of Life Care Work Group, former Chair of NHPCOs Ethics Advisory Council, Adjunct Professor at Seminary of the Southwest, and Assistant Professor for University of Maryland’s MS in Palliative Care. Dr. Cheatham publishes books and videos about healthy leadership and organizations, resilience, communication, trauma-informed care, post-traumatic growth, grief, service recovery, emotionally competent professionals and teams, and more.Michelle Davis
Michelle Davis
Executive Director
Michelle Davis (Kansas City, MO) is the Executive Director of International FOP Association (IFOPA). Most of her career has been spent working in the nonprofit sector, which included training and consulting with nonprofit staff, boards of directors and volunteers. In that role, Ms. Davis was exposed to many deserving causes, but her passion is working with patient advocacy organizations, including the Polycystic Kidney Disease (PKD) Foundation. While at the PKD Foundation, she became acquainted with the rare disease community which is what drew her to IFOPA. At IFOPA, Ms. Davis leads a team of six staff and partners with the Board of Directors to execute the organization’s strategic plan.Edward Hsiao, MD, PhD
Edward Hsiao, MD, PhD
Professor, Division of Endocrinology and Metabolism
Edward Hsiao, MD, PhD, is a Full Professor and Director of the UCSF Metabolic Bone Clinic at the University of California, San Francisco, CA. Dr. Hasio’s research is driven by a bedside-to-bench-back to-bedside approach, using clinical observations and patient samples to inspire the research with the long-term goal of improving the care of patients with all types of skeletal disorders including Fibrodysplasia Ossificans Progressiva (FOP). His laboratory uses a combination of human stem cell and mouse models to study how genetics and hormone signaling contributes to the normal formation of key skeletal tissues such as bone, cartilage, muscle, and fat. Furthermore, Dr. Hasio is a site investigator in interventional trials for an experimental compound to block heterotopic ossification in FOP.Lisa Gillooly
Lisa Gillooly
Parent of a child with Fibrodysplasia Ossificans Progressiva
Lisa Gillooly is a caregiver for her daughter Sara, 34, with Fibro Dysplasia Ossificans Progressiva (FOP). At seven months of age, Sara was diagnosed with FOP, and the family was told Sara had a short life expectancy. However, the family learned Sara could live a long life, so Lisa became Sara’s advocate. She started with getting Sara an equal education despite her physical disabilities. Also, Lisa learned to navigate the insurance system to acquire all the necessary medical equipment Sara needed. Lisa took her self-taught skills and shared them with many other FOP families. Lisa is a member of the Mothers FOP Group and helps other moms navigate raising patients with FOP. Lisa hopes reaching out in any way helps other families navigate this complex life even just a little bit easier.Hope Newport, MA, CCLS
Hope Newport, MA, CCLS
Family Services Manager
Hope began her role as the International FOP Association (IFOPA) Family Services Manager in April 2018. She holds a Master's Degree in Human Development and Family Studies from the University of Missouri and is a Certified Child Life Specialist. Hope has over a decade of experience working with families dealing with chronic conditions from her tenure at The Hole in the Wall Gang Camp and the Down Syndrome Guild of Greater Kansas City. During her time at the Camp, Hope developed the CampOut program to provide families with camaraderie and normalizing activities of summer camp. In her current role as Family Services Manager with IFOPA, she collaborates with subject-matter experts and families affected by FOP to create programs, services, and educational opportunities for the FOP community.Sheldon Fields, PhD, RN, FNP-BC, AACRN, FAANP, FNAP, FAAN
Sheldon Fields, PhD, RN, FNP-BC, AACRN, FAANP, FNAP, FAAN
Associate Dean for Equity and Inclusion
Dr. Sheldon Fields is an HIV-prevention research scientist who has maintained a primary focus on HIV prevention and treatment among underserved populations. He completed his PhD in nursing science from Pennsylvania State University and his post-doctoral work in the Center for AIDS Prevention Studies at the University of California, San Francisco. A lifetime member of the National Black Nurses Association, he currently serves as its first vice president. In 2020, Dr. Fields was appointed as the inaugural associate dean for equity and inclusion in the Ross and Carol Nese College of Nursing and received the Towers Pinnacle Award from the American Association of Nurse Practitioners (AANP). He holds fellowship status in AANP, the National Academies of Practice, and the American Academy of Nursing.Onyema Ogbuagu, MD, FACP, FIDSA
Onyema Ogbuagu, MD, FACP, FIDSA
Associate Professor of Medicine
Onyema Ogbuagu, MBBCh, FACP, FIDSA is an associate professor of medicine in the clinician-educator track and director of the HIV Clinical Trials program within the Yale AIDS Program in the Section of Infectious Diseases at Yale School of Medicine. Dr. Ogbuagu’s clinical responsibilities include educating and training medical students, residents, and infectious-diseases fellows in inpatient and outpatient settings. He also continues to mentor medical residents and junior faculty in Rwanda in quality improvement and clinical research projects that are locally relevant and address important infectious-disease problems, particularly the HIV/AIDS epidemic and antimicrobial resistance.Mamta Jain, MD, MPH, FIDSA
Mamta Jain, MD, MPH, FIDSA
Professor Infectious Diseases
Mamta K. Jain, MD, MPH, FIDSA is a Professor in the Department of Internal Medicine at UT Southwestern Medical Center. She specializes in infectious diseases and conducts clinical trials to evaluate new therapies for HIV, hepatitis C, influenza, and now COVID-19. Her research focuses on improving clinical outcomes for those with HIV and viral hepatitis, and she has received significant grant support for her work. Dr. Jain is a fellow of the Infectious Diseases Society of America and is on the Board of Directors for the HIV Medicine Association.Jürgen Floege, MD
Jürgen Floege, MD
Head of the Division, Nephrology and Immunology
Jürgen Floege, MD, is head of the Division of Nephrology and Immunology at the University of Aachen, Germany since 1999. Dr. Floege is a former executive council member of the International Society of Nephrology (ISN), the European Renal Association (ERA-EDTA), and currently coordinates the KDIGO glomerular disease management guidelines. His research interests encompass both basic research like studies underlying progression of renal disease in particular renal fibrosis as well as clinical research in immune-mediated renal disease, bone and mineral disorders (CKD-MBD), and cardiovascular disease in uremic patients. Furthermore, Dr. Floege is a Distinguished Fellow of the ERA-EDTA and recipient of the 2018 ERA-EDTA Award for Outstanding Clinical Contributions to Nephrology.Michelle O’Shaughnessy, MD
Michelle O’Shaughnessy, MD
Consultant Nephrologist
Michelle O’Shaughnessy, MB BCh BAO MS MD, is a Consultant Nephrologist at University Hospital Galway, Ireland. She is a Fellow of the American Society of Nephrology, Fellow of the Royal College of Physicians of Ireland, and member of the KDIGO Executive Committee. She has a clinical and academic subspecialist interest in glomerular diseases and has published over 50 peer-reviewed scientific manuscripts predominantly focusing on glomerular disease epidemiology and clinical outcomes. Current research funding from the Health Research Board (Ireland) and Irish Kidney Association supports research examining patient-reported outcomes in patients with glomerular disease. She is also establishing University Hospital Galway as a site for clinical trials in glomerular diseases, including IgA nephropathy.Edwin Kim, MD, MS
Edwin Kim, MD, MS
Associate Professor of Pediatrics
Edwin Kim, MD, MS is an associate professor of pediatrics at the University of North Carolina (UNC) School of Medicine and chief of the division of pediatric allergy and immunology. He is director of the UNC Food Allergy Initiative research group, which focuses on multiple aspects of food immunotherapy including safety and tolerability of immunotherapy, varying levels of clinical desensitization, and immune mechanisms involved in successful treatment. Dr. Kim is also interested in research that focuses on the development of novel therapeutics for food allergy. As director, his goal is to recruit and train the next generation of leaders in allergy and immunology through strong clinical training and productive research opportunities.Kristie Herring
Kristie Herring
Caregiver
Ruchi Gupta, MD, MPH
Ruchi Gupta, MD, MPH
Professor of Pediatrics and Medicine
Ruchi Gupta, MD, MPH is a professor of pediatrics and medicine at Northwestern University Feinberg School of Medicine and a clinical attending at the Ann & Robert H. Lurie Children’s Hospital of Chicago. With more than 20 years of experience as a board-certified pediatrician and health researcher, Dr. Gupta is the founding director of the Center for Food Allergy & Asthma Research (CFAAR). She is world-renowned for her groundbreaking research in the areas of food allergy and asthma epidemiology, most notably for her research on the prevalence of pediatric and adult food allergy in the United States. She has also significantly contributed to academic research in the areas of food-allergy prevention, socioeconomic disparities in care, and daily management of these conditions.Durga Borkar, MD
Durga Borkar, MD
Assistant Professor of Ophthalmology
Durga Borkar, MD is a board-certified, fellowship-trained adult vitreoretinal surgeon. She is an assistant professor of ophthalmology and assistant professor of population health sciences in Duke University’s Ophthalmology Department. She specializes in diabetic retinopathy, macular degeneration, retinal vascular occlusion, macular edema, macular holes, epiretinal membranes, vitreomacular traction, secondary intraocular lens placement, and complex retinal detachments, among others. Dr. Borkar’s academic interests include clinical-outcomes research using large administrative datasets. She has presented her work at numerous national and international retina meetings and is the recipient of several awards for excellence in research and clinical care, including the Heed Foundation Fellowship, the Society of Heed Fellows Award, and the AAO Advocacy Ambassador Award.Eritrea Mussa
Eritrea Mussa
Person living with Diabetes and Diabetic Macular Edema
Eritrea Mussa has lived with type 1 diabetes for 23 years and has worked in the diabetes space as an advocate for most of her adult life. In 2020, a diabetic macular edema diagnosis taught her that there are many people living successfully with diabetes complications. She has always carried a strong love of travel and culture. Both of her parents are immigrants to America and a big part of her life has been spent traveling to visit family around the world. In her free time, Eritrea co-hosts DiabeticsDoingThings (https://diabeticsdoingthings.com/podcast), a podcast that focuses on telling the amazing stories of people living with diabetes. Eritrea enjoys reading, napping, and, above all, laughing as much as possible. She resides in Dallas with her dog.Rishi P. Singh, MD
Rishi P. Singh, MD
Professor of Ophthalmology
Rishi Singh, MD, is a staff surgeon at the Cleveland Clinic Florida, Professor of Ophthalmology at the Lerner College of Medicine, and President of Cleveland Clinic Martin Hospitals in Stuart, FL. He specializes in the treatment of medical and surgical retinal disease such as diabetic retinopathy and age-related macular degeneration. Dr. Singh has authored more than 200 peer reviewed publications and serves as the principal investigator of numerous clinical trials advancing the treatment of retinal disease. Dr. Singh is the former president on the Retina World Congress and is on the board of the American Society of Retina Specialists. Dr. Singh has been honored with several research recognitions such as the Alpha Omega Alpha Research Award.