Joann Bodurtha, MD, MPH, FAAP, FACMG, Clinical Geneticist, Johns Hopkins School of Medicine
Joann Bodurtha, MD, MPH is the Co-Project Director for the New York Mid-Atlantic Caribbean Regional Genetics Network. She is a Professor of Genetic Medicine, Pediatrics and Oncology in the McKusick-Nathans Department of Genetic Medicine at the Johns Hopkins School of Medicine with appointments in the Department of Health, Behavior and Society in the Bloomberg School of Public Health and the School of Nursing. She sees genetic patients in the Harriet Lane Clinic, via telegenetics and by in-patient consultation. She transitioned from Virginia Commonwealth University (VCU) in 2011. She received her BA from Swarthmore College and her MD and MPH from Yale University. She did a year of research at the Nagasaki University School of Medicine as a Luce Scholar. Dr. Bodurtha completed her residency in pediatrics at Children’s Hospital of Philadelphia and worked as a US Public Health Service physician on the Turtle Mountain Chippewa Reservation in North Dakota. She completed her medical genetics fellowship at VCU. She helped start the Masters in Genetic Counseling program at VCU in 1990, the Va-LEND (Leadership Education in Neurodevelopmental Disabilities) program in 1995, and the Familial Cancer Clinic in 1998. She served on the American Academy of Pediatrics Committee on Native American Child Health for ten years. She received the Genetic Alliance Art of Listening award in 2008, the Association of University Centers on Disabilities Professional Achievement award in 2009, the VCU School of Medicine Women in Science, Dentistry, and Medicine Professional Achievement award in 2010, and the David Valle Clinical Teaching award in 2019. She was chair of the Virginia Genetics Advisory Committee. Her career goals are helping make genetics work to help individuals and families and helping communities be welcoming to persons with disabilities.
Sharon Chesna, Executive Director at Mothers & Babies Perinatal Network of SCNY
Sharon Chesna is the Executive Director of Mothers & Babies Perinatal Network of South Central New York – a regional community-based health/human service agency focused on the reduction of infant mortality. Ms. Chesna has over 30 years experience in the field of perinatal health which includes health care planning, program development and advocacy, and obstetrics/gynecology practice management.
Wendy Chung, MD, PhD, Clinical Geneticist, Columbia University Medical Center
Wendy Chung, M.D., Ph.D. is a clinical and molecular geneticist and the Kennedy Family Professor of Pediatrics and Medicine and Director of Clinical Genetics. She received her B.A. in biochemistry and economics from Cornell University, her M.D. from Cornell University Medical College, and her Ph.D. from The Rockefeller University in genetics. Dr. Chung directs NIH funded research programs in human genetics of pulmonary hypertension, autism, birth defects including congenital diaphragmatic hernia and congenital heart disease. She is a national leader in the ethical, legal, and social implications of genomics. She leads the Precision Medicine Resource in the Irving Institute At Columbia University. She has authored over 500 peer reviewed papers and 75 reviews and chapters in medical texts. She was the recipient of the Medical Achievement Award from Bonei Olam, the NY Academy of Medicine Medal for Distinguished Contributions in Biomedical Science, the Rare Impact Award from the National Organization of Rare Disorders, and is a member of the National Academy of Medicine and the American Academy of Physicians. Dr. Chung enjoys the challenges of genetics as a rapidly changing field of medicine and strives to facilitate the integration of genetic medicine into all areas of health care in a medically, scientifically, and ethically sound, accessible, and cost effective manner.
Christen Crews, MSN, RN, Newborn Screening Program, Virginia DOH
Christen Crews is the Public Health Nurse Supervisor for the Virginia Newborn Screening Program. She has a passion for CQI, education, and process improvements that have positively changed outcomes for the program and families in Virginia.
Vivien Díaz-Barrios, MS, CGC, Consulting Genetic Counselor to NYMAC and Lecturer, The City University of NY, Eugenio Maria de Hostos Community College
Vivien Díaz-Barrios has worked as a genetic counselor for over 40 years. She graduated from Sarah Lawrence College and is board certified along with holding 9 licenses to practice in various states that is required for her telegenetics work. She worked for over ten years establishing prenatal genetic clinics in 3 separate NYC Health and Hospitals facilities and dealt with many Spanish speaking people that utilized these hospitals for their medical care. She then was able to move on to a large County Hospital in Long Island with a similar population. She again established a prenatal clinic for the Hospital patients, received referrals from the Health Center clinics that surrounded the hospital and received patient referrals from physicians in the area. She worked there for 23 years, retiring from there to move on to other pursuits namely telegenetics counseling. She works part time as an independent contractor and with a genetic counseling service to see clients who live in the States where a license to practice is required. She began working as a consultant with the NYMAC regional genetics network last year bringing her experience in working with Spanish speaking families by sharing her knowledge regarding their country of origin and the nuances present between the various cultures that reside in the NYMAC region.
Nadia Falah, MD, Clinical Geneticist, West Virginia University
Dr. Falah is an assistant professor at the department of Pediatrics, division of Genetics and Metabolism at West Virginia University. She is one of the West Virginia Advisory Council on Rare Disease.
She earned her medical degree from Tripoli University of Medical Science in Tripoli, Libya. She then completed a residency in clinical genetics at the University of Miami Leonard M. Miller School of Medicine/Jackson Health System. Dr. Falah pursued a fellowship in clinical pharmacology at Indiana University School of Medicine/IU Health. She also holds a Master of Science degree in clinical investigation from Vanderbilt University in Nashville, Tennessee. Dr. Falah is board certified in medical genetics. She is a member of the American College of Medical Genetics and Genomics. Dr. Falah’s work has been published in peer-reviewed journals and she has presented at medical conferences. She also serves as a reviewer for several medical journals and a Consultant for Magellan Rx Management, LLC.
Brenda Figueroa, Director, F2F and P2P of NJ, Parent Group Specialist START
Brenda L. Figueroa is SPAN’s Director of Family to Family Health Information Center and the NJ Statewide Parent to Parent. Brenda is a graduate of Partners in Policymaking 2017. Her most important role, however, is mom to 2 young men with disabilities. Brenda believes in the power of inclusion, high expectations, and informed parents. She has successfully advocated for her sons, and she is currently teaching them to advocate for themselves.
RaeLynn Forsyth, MD, Clinical Geneticist, Johns Hopkins School of Medicine
Dr. RaeLynn Forsyth is a medical genetics fellow at Johns Hopkins Hospital where she completed her residency in pediatrics and genetics. She is particularly interested in integrating genetics education in the clinical training of non-geneticists. She will begin a 1 year medical biochemical genetics fellowship at Pittsburgh in July. She is confident that she will continue to contribute to NYMAC in many ways.
Maria Isabel Frangenberg, Consultant, Family Voices National
Maria Isabel is a diversity and inclusion consultant committed to understanding meaningful engagement of under–served communities. She started collaborating with NYMAC almost a decade ago after completing her LEND (Leadership Education in Neurodevelopmental Disabilities) work in VA while Dr. Bodurtha was the director of that program.
Barbara Harrison, MS, CGC, Genetic Counselor, Howard University College of Medicine
Barbara Harrison is a certified genetic counselor and provides genetic counseling services at Howard University Hospital, primarily in prenatal genetics. She is an Assistant Professor and teaches graduate students, medical students, and medical residents in various specialties, in the areas of genetics, genetic testing, genetic counseling and ethics. In addition to these duties, she is the Assistant Director for Community Outreach and Education for the HU Center for Sickle Cell Disease.
Coralaidee Jimenez Burgos, Parent and Family Representative for the Children with Special Health Care Needs Program.
Coral Jimenez is the mother of a teen with multiple conditions including microcephaly, intellectual disability and others. She has worked with the population of CSHCN since 2009 when she became a Family Representative for the Children with Special Health Care Needs Program.
Yvonne Kellar-Guenther, PhD, Senior Research Scientist, Center for Public Health Innovation
Yvonne Kellar-Guenther, Ph. D.,received her doctorate in interpersonal communication and has been working as a program evaluator in public health for over 20 years. She has trained on Continuous Quality Improvement for over 10 years and has led 3 national CQI projects and many statewide CQI projects.
Alexander Y. Kim, MD, Clinical Geneticist, Johns Hopkins School of Medicine
Dr. Alexander Kim is the current Medical Biochemical Genetics Fellow at Johns Hopkins Hospital and has completed training in both Pediatrics and Medical Genetics, the latter of which included an extended Chief Residency. Afterwards, he will join the faculty at Johns Hopkins All Children’s Hospital to build a new metabolic genetics program.
Kelly King, M.Ed., F2F Information Center Coordinator PEAL Center PA
Kelly King leads Pennsylvania’s F2F, assisting families and giving voice to family and individual concerns for children and youth with special healthcare needs in community, regional, and state projects and organizations. She also provides outreach and education, consistent with the PEAL mission, so that children, youth and young adults with disabilities and special health care needs lead rich, active lives as full members of their schools and communities.As the parent of two sons with disabilities, she has experienced firsthand many of the issues that families deal with when navigating medical, education, behavioral and mental health systems and the transition to adult service systems.Kelly holds a Master’s Degree in education and is a Licensed Behavior Specialist.
Danielle Louder, Director, Northeast Telehealth Resource Center
Danielle Louder is Director of the Northeast Telehealth Resource Center (NETRC), where she leads efforts focused on implementation and growth of telehealth programs throughout the NETRC region, as well as collaborating with the National Consortium of TRCs on nation-wide efforts to advance the reach and impact of telehealth. Ms. Louder also serves as Co-Director of Medical Care Development’s domestic Public Health Division.
Molly Martzke, Senior Program Manager, Expecting Health/Genetic Alliance
Molly Martzke brings passion and real-life experience to her role with the National Genetics Education and Family Support Center where she serves as the Senior Program Manager. Molly has extensive experience working with diverse groups from local to international in providing family leadership training. She has dedicated her life’s work to improving the experiences and outcomes of all families with children with special healthcare needs. Molly is committed to actively engaging families as equal partners in their child’s health care and ensuring that the family voice is represented throughout the family’s journey and within their system of care. She believes that this change happens at the system level when there is diverse representation and honest dialogue amongst all parties.
Jeannette Mejias, SEVA Project Director, SPAN NJ
Jeannette is a NJLEND Family Fellow (2016-2017). Currently, Jeannette is the Director of the Special Education Volunteer Advocates (SEVA) project, funded through the NJ DOE. She leads a diverse team and has trained over 220 volunteer parents across the state to serve as mentors to families who are looking for support to advocate for their Children and youth with special healthcare needs at IEP meetings. She also serves as a statewide bilingual coordinator/trainer for SPAN’s Family to Family Health Information Center and Parent Training & Information Center. Jeannette is a Family Reviewer for HRSA’s Maternal & Child Health Block Grant Applications. She also serves on the New Jersey Newborn Screening Advisory Review Committee and is the Vice President of the Egenolf Early Childhood Center Board of Directors. Jeannette is a graduate of the Family Scholar Program of the Association of Maternal & Child Health Programs (AMCHP) and the recipient of AMCHP’s 2015 Young Maternal Child Health Professional Award for Region II. In the past, she has served as a Family Liaison for the Friends of the National Center for Birth Defects and Developmental Disabilities. She is also the recipient of the New Jersey Institute on Disabilities Community Award for her work to empower and engage Latino and other immigrant families with CYSHCN (2017).
Lin Perry, Project Director, Family to Family Health Information Center/Parent to Parent NYS
Lin Perry is the Project Director of the Family to Family Healthcare Information Center at Parent to Parent of New York State. She is also the mother of four children, ages 19, 17, 15, and 12 years old- whom she likes to call “The Perry Fab 4”- that all have the same non-specific connective tissue disorder. Lin’s oldest son also has autism type 1 and ADHD and her youngest son has ADHD. Lin’s passion for the work she does comes from her desire to help families have an easier path than her family has had navigating the many systems that comprise the care of children who have disabilities and complex medical conditions.
Yvonne Petersen, Territorial Executive Director V.I. Developmental Disabilities Council, Inc.
Yvonne is the Territorial Executive Director V.I. Developmental Disabilities Council, Inc. She is also the Program Director for the family to family information Center for the Virgin Islands. Yvonne is forming the first parent navigator group in the USVI, and is actively involved with members of the USVI legislature to bring equitable access to health care and education to all the families of the territory.
Charité Ricker, MS, CGC, Genetic Counselor, Keck School of Medicine, USC
Charité Ricker, MS is a Clinical Instructor of Medicine at the University of Southern California and the Director of Genetic Counseling at LAC+USC Medical Center. She has been a cancer genetic counselor for almost 20 years and has been committed to improving access to genetic services. As a Spanish-speaking genetic counselor of Cuban descent, she has been particularly focused on improving access to cancer genetics to the Hispanic/Latinx community.
Roseani Sánchez, MA, Family Voices National
Roseani Sánchez is the Project Coordinator at Family Voices National, where she focuses on organizational development across different projects that support underserved communities, inclusion in all aspects of family engagement and family-centered practices. She is a native Spanish speaker from Puerto Rico and a mother of twin boys.
Juliann M. Savatt, MS, CGC, Genetic Counselor, Geisinger
Juliann Savatt is a certified Genetic Counselor at Geisinger in central Pennsylvania. For the past six years, Juliann has held both research and clinical roles including coordination of ClinGen patient data sharing efforts, care of patients in the Cancer Genetics Clinic and Autism & Developmental Medicine Institute, and facilitation of research exploring the outcomes of returning actionable genomic results to biobank participants.
Natasha Shur, MD, Clinical Geneticist, Children's National Medical Center
Dr. Natasha Shur is an Associate Professor of George Washington, a medical geneticist at the Rare Disease Institute at Children’s National, and the lead of Telemedicine for the Division of Genetics and Metabolism. Previously, she served as a Division Head of Albany Medical Center and worked at Rhode Island/ Hasbro hospital teaching at Brown University. She graduated from the Albert Einstein College of Medicine, and she completed her pediatric residency and genetics fellowship at Montefiore Medical Center in the Bronx. Dr. Shur has been a clinical geneticist for over fifteen years. She has authored over forty publications, numerous book chapters, lectured at international conferences, and taught and mentored medical students and trainees throughout her career. Dr. Shur has received grant support for research in newborn screening, metabolic treatments, and telemedicine. Her current focus centers on improving clinical care models for rare disease in order to ease patient burden. In this role, she focuses on innovation, leading clinical initiatives to develop apps and virtual education, telemedicine clinical programs, and works in close collaboration with the Children’s Research Center for Innovation and Telemedicine Divisions. In addition, she serves as the lead geneticist for the Craniofacial and Vascular multidisciplinary clinics. This past year, she has had the honor of co-leading the New York Mid-Atlantic Caribbean Regional Genetics Network (NYMAC) DC committee, which focuses on improving access to genetics care.
Throughout her career, Dr. Shur has won numerous Dean’s teaching awards, awards for patient care including a Bright Light Award and Starlight Foundation Award, and most recently, NORD has announced that she has received the award: “This Year’s Heroes of Rare Disease.” She serves a Diplomate of the American Board of Medical Genetics, and she is a proud member of the Ray Helfer Society for Child Protection, which requires five years of dedicated work in child protection. She also serves as a member of the National Society of Pediatric Radiology Imaging Committee, a group that develops international guidelines for genetics work up in fracture and hemorrhage.
Alissa Terry has been a Genetic Counselor for 15 years, and has worked with NYMAC for the past 5 years. Alissa leads NYMAC’s telehealth efforts and also supports the work of the NYMAC Teams and efforts around diversity, education and family engagement.
Kathy Wibberly, PhD, Director, Mid-Atlantic Telehealth Resource Center
Kathy Wibberly, Ph.D.,is Director of the Mid-Atlantic Telehealth Resource Center (MATRC), federally funded to assist with telehealth program development and sustainability in order to increase access to quality care for rural and other underserved populations. Kathy is also Director of Research for the Karen S. Rheuban Center for Telehealth, Assistant Professor of Public Health Sciences at the University of Virginia (UVA) School of Medicine, faculty member at the Healthy Appalachia Institute and adjunct faculty member in the L. Douglas Wilder School of Government and Public Affairs at Virginia Commonwealth University (VCU).
Dr. Woerner has been providing Telegenetics services for over 10 years. She is the director of Telegenetics at UPMC Children’s Hospital of Pittsburgh and provides both inpatient and outpatient Telegenetics consult services.
Dana Yarbrough, Center for Family Involvement, VCU
Dana Yarbrough is the assistant director of the Partnership for People with Disabilities, Virginia’s university center for excellence in developmental disabilities located at Virginia Commonwealth University. Among her many responsibilities, Dana directs the Center for Family Involvement (Virginia’s MCHB funded F2FHIC), is a strategic direction manager for the Virginia LEND program, and oversees the CDCs Learn the Signs. Act Early! project. Dana is also the mother of a 26-year-old daughter who despite significant support needs for physical, intellectual and physical disabilities owns her own dog boarding business. Dana holds a masters degree in non-profit transformational leadership and a masters degree in special education secondary transition.
Randi Zinberg, MS, MS, CGC, Assistant Professor Icahn School of Medicine at Mount Sinai
Randi Zinberg MS, MS, CGC is an Assistant Professor in the Department of Genetics and Genomic Sciences and Director of the Graduate Program in Genetic Counseling at the Icahn School of Medicine at Mount Sinai. For over 30 years Ms. Zinberg has provided genetic counseling services to individuals and families referred for genetic counseling issues from preconception to adulthood. Currently, her genetic counseling practice includes the provision of pre-and post- counseling of variant and whole genome sequencing findings as well as the design and implementation of clinical genomics related studies.