Alexandra Pender, MA
Ms. Pender currently sits as a Trustee of the Joseph P. Kennedy Jr. Foundation which works to promote the public policy issues as well as the overall social, educational, and health needs that impact people with intellectual disabilities. She has also been working on immigrant and refugee issues since 2010 and began working in non-profit communications and advocacy in 2012. She is currently the Director of Digital Media for Kids in Need of Defense (KIND) where she specializes in digital communications and social media outreach. Ms. Pender holds a master’s degree in Political Communications from American University and a bachelor’s degree in American History from Union College.
Dr. Diana Bianchi
Diana W. Bianchi is the Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). She received her M.D. from Stanford and her postgraduate training in Pediatrics, Medical Genetics and Neonatal-Perinatal Medicine at Harvard. Dr. Bianchi’s research focuses on noninvasive prenatal screening and development of novel fetal therapies for genetic disorders. She has published over 300 peer-reviewed articles and is one of four authors of Fetology: Diagnosis and Management of the Fetal Patient, which won the Association of American Publishers award for best textbook in clinical medicine in 2000. She is Editor-in-Chief of the International Society for Prenatal Diagnosis’ (ISPD) official journal, Prenatal Diagnosis. She has held multiple leadership positions, including President of the ISPD and the Perinatal Research Society, council membership in the Society for Pediatric Research (SPR) and the American Pediatric Society. Dr. Bianchi received the Neonatal Landmark Award from the American Academy of Pediatrics, the Maureen Andrew Award for Mentorship from the SPR, the Colonel Harland Sanders Award for lifetime achievement in Medical Genetics, and the Pioneer Award from ISPD. In 2013 she was elected to the National Academy of Medicine. She has an honorary Ph.D. from the University of Amsterdam.
Dr. Marsha Michie
Dr. Marsha Michie is an Assistant Professor in the Department of Bioethics at Case Western Reserve University (CWRU). Prior to joining CWRU, Dr. Michie was an Assistant Professor at the Institute for Health and Aging at the University of California, San Francisco, where she held appointments in the Department of Social and Behavioral Sciences and the Department of Obstetrics, Gynecology, and Reproductive Sciences, and was a collaborator in UCSF Bioethics and the UC Bioethics Collaboratory. Dr. Michie received her PhD in Anthropology from the University of North Carolina–Chapel Hill. She also completed postdoctoral training at the UNC Center for Genomics and Society, followed by a postdoctoral fellowship at the Stanford Center for Biomedical Ethics.
Dr. Brian Skotko
A Board-certified medical geneticist, Dr. Skotko is the Emma Campbell Endowed Chair on Down Syndrome at Massachusetts General Hospital. As the Director of the hospital’s Down Syndrome Program, he has dedicated his professional energies toward children with cognitive and development disabilities. He co-authored the national award-winning books, Common Threads: Celebrating Life with Down Syndrome and Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. He is a graduate of Duke University, Harvard Medical School, and Harvard Kennedy School, and he is currently an Associate Professor at Harvard Medical School. Dr. Skotko is a leader on clinical and translational research about Down syndrome. He has been featured in The Wall Street Journal, The New York Times, The Washington Post, The L.A. Times, NPR’s “On Point,” and ABC’s “Good Morning America.” Dr. Skotko has a sister with Down syndrome and serves on the Honorary Board of Directors for the Massachusetts Down Syndrome Congress.
Natasha Bonhomme brings nearly 15 years of nonprofit and maternal and child health experience to her role at Expecting Health at Genetic Alliance. She launched Expecting Health to bring a range of consumer and professional stakeholders together to address the need for clear, science-based information for families and individuals through tangible, actionable messages. Her focus is on centering families’ perspectives into policy and program design and implementation. She spearheaded a number of initiatives including Baby’s First Test, a national resource center which reaches over 600,000 families and health providers annually, convenes the Perinatal Nutrition Collaborative, a coalition of organizations and nutrition experts that share emerging science and research efforts, and sits on numerous committees on maternal health and dignified care throughout the prenatal and postnatal periods. Ms. Bonhomme has also testified in front of Congress on the importance of family support and education. She is a Board Member of the DC-based Federally Qualified Health Center, Whitman-Walker Health, which provides affirming community-based care with a special focus on LGBTQ and HIV care.
Dr. Kara Ayers
Dr. Kara Ayers is the Associate Director and an Assistant Professor at the University of Cincinnati Center for Excellence in Developmental Disabilities (UCCEDD). She is Director of the Center for Dignity in Healthcare for People with Disabilities and also a co-founder of the Disabled Parenting Project. Dr. Ayers’ interests include disability identity/culture, bioethics, community inclusion, and the use of media to teach, empower, and reduce stigma. She serves on multiple task forces and national and state coalitions related to improving outcomes for people with disabilities and infuses the mantra, “Nothing about us without us,” into all of her scholarly and community-based pursuits.
Mr. Levitz is a disability specialist and an independent consultant and advisor focusing on self-advocacy & self-determination. He has experience in training medical and other health professionals and co-developed training curricula including the website: www.TakingChargeofMyHealth.org. He is an appointed member of the NIH/NICHD National Down Syndrome Research Consortium and serves on the NDSS Self-Advocacy Resource Council. He is a member of the review board of the National Center for Prenatal and Postnatal Down Syndrome Resources/ Lettercase Project and is a consultant for the National Center for Dignity in Healthcare for People with Disabilities (CDHPD).A national speaker for more than 30 years, he co-authored the book Count Us In: Growing Up with Down Syndromeand has also contributed to various other publications.
Angela Trepanier, MS, CGC
Angela Trepanier, MA, CGC has over 20 years experience as a certified genetic counselor and an educator in medical genetics. She has served as the director of the genetic counseling graduate program at Wayne State University for the last 15 years. She has over 20 publications in clinical genetics and genetic counseling. Ms. Trepanier is a member of the executive committee of the Association of Genetic Counseling Program Directors (secretary), and a past board member of the National Coalition of HealthProfessional Education in Genetics, the Genetic Counseling Foundation, the Michigan Association of Genetic Counselors, and the National Society of Genetic Counselors (NSGC). She served as the NSGC president in 2008. Ms. Trepanier is involved in a number of professional volunteer activities including serving on the NSGC Genetic Counseling Outcomes workgroup, the NSGC Licensure subcommittee, and the Association of Genetic Counseling Program Directors Committee on Advanced Training for Certified Genetic Counselors.
Katie Stoll, MS, CGC
Katie Stoll, MA, CGC received her Bachelor of Science in Biology from Colorado State University, and her Master’s degree in Genetic Counseling from Brandeis University. She brings a diversity of clinical experience in the areas of prenatal, cancer, adult, and pediatric genetics. She has worked in a variety of settings including military healthcare systems, health maintenance organizations, community hospitals, outpatient clinics, and research.
Ms. Stoll has been an active contributor to the profession of genetic counseling through her work with the National Society of Genetic Counselors (NSGC) and participation in various projects developing educational tools for patients and providers regarding prenatal genetic tests.
Mark Leach, JD, MA
Mark Leach, JD, MA is an attorney with a Master’s in Bioethics. He has presented at international, national, regional, and local conferences for obstetricians, medical geneticists, genetic counselors, bioethicists, and Down syndrome support organizations. He has also been published in professional journals, national and local newspapers, and on-line blogs and participated in the Hastings Center report.
Stephanie Meredith, MA
Stephanie Meredith, MA, is the Director of the Lettercase National Center for Prenatal and Postnatal Resources at the University of Kentucky’s Human Development Institute. She is also the author of “Understanding a Down Syndrome Diagnosis” and similar resources about other prenatally-diagnosed genetic conditions. In addition, Meredith is the co-author of “Diagnosis to Delivery: A Pregnant Mother’s Guide to DS” and “Welcoming a Newborn with Down syndrome,” as well as other titles in that series. Further, she offers presentations and training nationwide about providing support and information to new and expectant parents learning about a diagnosis.