Carolyn Applegate, MGC, CGC
Carolyn Applegate, MGC, CGC is the Genetic Counselor Manager at the Johns Hopkins University, McKusick-Nathans Department of Genetic Medicine. Carolyn has over ten years of clinical experience providing genetic counseling in general genetics clinics as well as specialty clinics including Epigenetics and Chromatin disorders, disorders of telomere shortening, hematologic malignancies, and retinal disorders. Prior to coming to Johns Hopkins, Carolyn worked for the state of Maryland’s Newborn Screening Follow-up Program. She received her undergraduate degree in Cellular and Molecular Biology with a minor in Psychological and Brain Sciences from Johns Hopkins University. She received her Master’s degree in Genetic Counseling from the University of Maryland School of Medicine. She is a diplomate of the American Board of Genetic Counseling, and is currently on the Board of the National Society of Genetic Counselors, and is a founding member and current Chair of the Public Policy committee of the Maryland DC Society of Genetic Counselors.
Joann Bodurtha, MD, MPH, FAAP, FACMG
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.
Dieana Brand
My name is Dieana Brand. I am a 37 year old mom. I have 4 children between the ages of 18 and 4. I’m currently a stay-at-home mom with some college education. I consider myself an advocacy expert on telegenetics because my son and I use the technology for quite a few of his appointments. My son was diagnosed with DiGeorge syndrome shortly after birth, and with all of his appointments, telegenetics has made them easier to do so we don’t have the stress of going in for appointments when he doesn’t have to be physically examined.
Michele Caggana, ScD, FACMG
Michele Caggana, ScD, FACMG is the Co-Project Director for the New York Mid-Atlantic Caribbean Regional Genetics Network. She received her doctoral degree from the Harvard School of Public Health and completed post-doctoral work in clinical molecular genetics at the Mt. Sinai School of Medicine. She is board certified in clinical molecular genetics by the American Board of Medical Genetics and a fellow of the American College of Medical Genetics and Genomics. Dr. Caggana has been employed by the Wadsworth Center since 1996, where she is Deputy Director of the Division of Genetics, Chief of the Laboratory of Human Genetics, and Director of the Newborn Screening Program. She has been involved in many national newborn screening efforts, including the national pilots for severe combined immunodeficiency, Pompe disease, spinal muscular atrophy and Duchenne muscular dystrophy. Dr. Caggana works with the Centers for Disease Control and Prevention, Health Resources and Services Administration and the Association of Public Health Laboratories. She is a member of the National Advisory Child Health and Human Development Council and the Newborn Screening and Translational Research Network’s Steering Committee. She chairs the Newborn Screening Committee for the Association of Public Health Laboratories and Co-Chairs the Pilot Implementation Work Group for the Newborn Screening Translational Research Network. Her laboratory has developed several new newborn screening tests and uses DNA technology to improve newborn screening.
Andrea Cantor, MS, LCGC
Andy Cantor, MS, LCGC (she/they/he) – Prenatal Genetic Counselor at Integrated Genetics. Andy is a non-binary person and a certified trainer on trans and non-binary competency. They have designed and presented many trainings on genetic counseling for trans and non-binary patients and are an active member of the Labcorp LGBTQ+ ERG with whom they provide competency training to patient service center staff and other departments across the country and internationally. They have presented at NSGC, NYC genetics taskforce, the Texas GC association, the Pennsylvania GC association, the UK society for genetic nurses and counselors and provided guest lectures for genetic counseling programs. Andy serves on the Cancer SIG gender inclusivity sub-committee and is a member of the Integrated Genetics JEDI committee. Andy is a passionate educator and advocate for the rights, acceptance, and respect of the trans and non-binary community.
Jennifer Cedeno, MS
Jennifer (Jen) Cedeno, MS has been a Genetic Assistant at Johns Hopkins University for over 10 years. Jen was the first Genetic Counselor Assistant at Johns Hopkins and paved the way for the additional GA positions over the last few years. The first part of her career was spent in the DNA Diagnostic Laboratory, the University’s clinical genetic testing lab. After 10 years in this position, Jen transitioned into a clinical role within the Institute of Genetic Medicine where she works with eight genetic counselors and twelve medical geneticists. Jen has an undergraduate double major in Biology and Marine Science with a minor in Chemistry from University of Miami, and a Master’s degree in Environmental Science and Policy from Johns Hopkins University.
Cheyla Clark
Cheyla Clark is a board-certified genetic counselor. She specializes in genetic counseling for patients who are at risk for hereditary cancer syndromes and sees patients in multiple clinics around the Dallas metroplex. She earned her Master of Public Health with a concentration in Human Genetics in 2014 from the University of Pittsburgh and her Master of Science in Genetics and Genetic Counseling in 2020 from Stanford University School of Medicine. Prior to practicing cancer genetics, she worked as a prenatal genetic counselor at a maternal fetal medicine practice. Her interests include working with underserved populations, alleviating health disparities in genetics and genetic counseling by improving access to genetics care, and mentorship. She also has a passion for genetics education and outreach. When she is not working, she enjoys trying new restaurants, working out, and going on new adventures with her best friends.
Christen Crews, MSN, RN
Newborn Screening and Birth Defects Surveillance Programs Manager, Virginia Department of Health
I have served in a leadership position with the Virginia Newborn Screening Program for the last 8 years. I also managed a clinical research center for Johns Hopkins University for 5 years. I have an established passion for public health as evidenced by current and past dedication to program development, education, and management of the Dried Blood Spot (DBS) Newborn Screening (NBS), Critical Congenital Heart Disease (CCHD) and Sickle Cell Disease, Early Hearing Intervention and Detection (EHDI), Rare Disease Council, and Birth Defects Surveillance (BDS) programs in Virginia. I am a leader of change with documented successful outcomes of quality improvements by designing, integrating, troubleshooting, and providing training on new technology to revolutionize NBS-DBS critical reporting, follow-up, and communication across the Commonwealth of Virginia. These initiatives have been presented and recognized at a national level, and I have implemented novel web-based platform for reporting critical newborn screening results, receiving timely follow-up, improving data quality, and enhancing communication to our Cystic Fibrosis Centers and stakeholders across the Commonwealth.
Amanda de Leon, MS, CGC
Amanda de Leon, MS, CGC is a certified cancer genetic counselor at UT Southwestern Medical Center. During her her graduate training she, herself, did her own Spanish immersion rotation at LAC+USC medical center. Her thesis during graduate school focused on Spanish language concordance in genetic counseling sessions. In her current role she provides counseling in Spanish to two county hospitals that serve large Spanish speaking patient populations. Amanda’s background includes being a supervisor for the UTGCP Spanish immersion program, being the Latinx/Hispanic lead for Minority Genetics Professional Network and being one of the co-founders of the Latin American Society of Genetic Counseling.
Suzanne Flynn, RN
Suzanne Flynn is a graduate of the Connell School of Nursing at Boston College. A pediatric nurse for 21 years, she lives in Crestwood, New York with her husband, Ken and three children—Charlotte (14 years), Gavin (12years), and Patrick (8 years). Her youngest child, Patrick, was diagnosed with ALD at birth through newborn screening thanks to Aidan’s Law in New York State. Her older son, Gavin, was then tested and was also found to have ALD. Both boys are under the care of Dr. Florian Eichler at Mass General Hospital in Boston. They are asymptomatic and doing very well.
RaeLynn Forsyth, MD
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.
Muin J. Khoury, MD, PhD
Dr. Khoury is the founding director of the CDC’s Office of Genomics and Precision Public Health. The Office was formed in 1997 to assess the impact of advances in human genetics and the Human Genome Project on public health and disease prevention. In 2019, the Office was renamed to the Office of Genomics and Precision Public Health. Dr. Khoury has developed a number of successful ongoing national and international initiatives to translate advances in genomics and precision health technologies to recommendations and actions that improve health and prevent disease throughout the life stages.
Dr. Khoury received his B.S. degree in Biology/Chemistry from the American University of Beirut, Lebanon and his medical degree and Pediatrics training from the same institution. He received a Ph.D. in Human Genetics/Genetic Epidemiology and training in Medical Genetics from Johns Hopkins University. Dr. Khoury is board certified in Medical Genetics.
Dr. Khoury received the Public Health Service Special Recognition Award in 1990 for his outstanding contribution to the scientific literature in the areas of birth defects and genetic epidemiology. In 1994, he received the Arthur Fleming Award for outstanding government service. In 1998, Dr. Khoury was credentialed for the Senior Biomedical Research Service for outstanding contributions to public health. In 2000, he received the CDC Research Honor Award for outstanding national leadership in genetics and public health.
Dr. Khoury has published extensively in the fields of genetic epidemiology, public health genomics and precision public health. He has over 500 scientific publications including articles, books and book chapters. In 1993, he published a textbook entitled: “Fundamentals of Genetic Epidemiology”. In 2000, he was the lead editor for the book entitled: “Genetics and Public Health in the 21st Century: Using Genetic Information to Improve Health and Prevent Disease”. His 2004 book entitled “Human Genome Epidemiology” illustrates the applications of epidemiologic methods and approaches to the continuum of genomic information from research to practice. In 2010, he published a completely updated second edition of “Human Genome Epidemiology”.
Dr. Khoury is a member of many professional societies and serves on the editorial boards of several journals. He is a frequent keynote speaker at many academic institutions, professional organization meetings, as well as state, regional, national and international conferences. He also serves on several scientific, public health, and health policy national and international committees. He is an adjunct professor in the Departments of Epidemiology and Environmental and Occupational Health at Emory University Rollins School of Public Health and an associate in the Department of Epidemiology at Johns Hopkins University Bloomberg School of Public Health.
Danielle Louder
DANIELLE LOUDER is Program Director for the federally funded (HRSA/OAT) Northeast Telehealth Resource Center (NETRC), a member of the National Consortium of Telehealth Resource Centers , where she leads efforts focused on implementation and growth of telehealth programs throughout the NETRC region, (New England and NY), as well as collaborating with colleagues from the National Consortium on nation-wide efforts to advance the reach and impact of telehealth. Regional activities are carried out in partnership with the University of Vermont’s Telemedicine Program, and through collaboration with many additional stakeholders throughout the region. Key efforts include working with stakeholders to advance access and improve health outcomes for rural and underserved populations through innovative models, (e.g. Project ECHO® ), and assisting health systems and providers to leverage telehealth to address today’s crucial health issues, (e.g. the opioid crisis).
Ms. Louder also serves as Co-Director of MCD Public Health, the U.S. based division of the global non-profit organization, Medical Care Development. In this role she is responsible for growth of the U.S. based portfolio, facilitating collaborations with organizations regionally and nationally, and serving in a number of leadership positions, including representation of telehealth and rural health on state, regional and national advisory and planning workgroups, and was appointed by Governor Janet Mills to the Board of Directors for the Maine Connectivity Authority in July 2021.
Melissa Maisenbacher, MS, CGC
Melissa Maisenbacher graduated from the University of Notre Dame with a BS in Biology, and Arcadia University, with a MS in Genetic Counseling. Her career path has been varied including: full-time pediatric clinical genetics at the Children’s Hospital of Philadelphia and the University of Florida where she also co-directed the Residency program in Genetics. She joined Natera in 2009 where her role has expanded to the Director of Clinical Projects, Data and Content. Currently, she focuses on creating new modes and methods of educating patients and providers. Melissa lives in Virginia Beach with her husband and three children.
Molly Martzke
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.
Jeniffer Meléndez
Born in Aibonito, Puerto Rico. She moves to Miami five years ago looking for a better life for his son with Angelman Syndrome. In Miami she opens a small business and become an advocate for Angelman Syndrome and HHT, both conditions are present in her family. She uses the power of social media to raise awareness that led her to be noticed. Her goal is that every patient in Puerto Rico have the correct diagnosis and with that the appropriate treatment.
Miranda Miller, BS
Miranda Miller is a patient, parent of a patient, and research study participant at The Children’s National Rare Disease Institute based out of the Washington, DC Metro area. She is a Business and People Operations Consultant with over a decade of experience and holds a Bachelor’s Degree in Philosophy.
Kadeem D'Shai Morgan
Kadeem was diagnosed with Cystic fibrosis when he was 1 years old. Kadeem grew up in a predominantly white area, with a disease that primarily affects people who are white. He felt forced into an even more niche demographic because of this. There was no one with his condition who looked like him and very little people in his school who looked like him. However, Kadeem was able to keep his spirit strong with his love of music. In high school, he was a part of the school band ensemble playing the saxophone, in jazz quartets, African dance, and dj-ing. He aspires to be a music therapist, youth and child social worker, and youth counselor. Kadeem has had two lung transplants to date (one in 2017 and one in 2020) and through this process was able to finally find his long-awaited CF community through a CF/transplant facebook group. Blog post “Being black in the CF community” : From being a black youth to becoming a black man growing up in a predominately white environment, I had and still have to hold myself to a certain standard to avoid discrimination and any other acts of inequality. Having CF while living in such a climate allowed me to view life as a whole from a very special point of view. CF is me, but CF does not define who I am. I am a strong black man, but I’m also a human being like everyone else.
Patient Advocate
Cystic Fibrosis Canada
Jan 2018 – Present · 4 yrs 4 mos
Toronto, Canada Area
Mylynda B. Massart, MD, PhD
Mylynda B. Massart, M.D., Ph.D., is a board-certified Family Medicine physician at UPMC, and assistant professor at the University of Pittsburgh. She completed her doctoral degree at the University of Utah in Molecular Biology/Biochemistry and her medical degree from Oregon Health Sciences University. She currently serves as the founder and director of the UPMC Primary Care Precision Medicine Center, Chair of Family Medicine at UPMC Magee Women’s Hospital, and as a co-director for the HUB Core: Integrating Special Populations and Community Partners Core at the Clinical and Translational Science Institute (CSTI). Dr. Massart has experience working with diverse populations across the lifespan including obstetrics, pediatrics, adults, and older adults. She has served in the National Health Service Core in Idaho working with a rural population and currently works in an underserved community in Pittsburgh. Her research interests are in developing education in genetics and precision medicine for primary care providers and trainees and to be a research catalyst facilitating the inclusion of underrepresented populations in biomedical research. She teaches residents and medical students in her clinic and at the hospital and serves as medical director for Bethany Hospice. Currently, Dr. Massart is one of the co-Investigators for the All of US Pennsylvania research project working on community education and engagement. In addition, she is working as co-Investigator to create the local Pitt+Me Discovery Biobank at the University of Pittsburgh and developing systems to return precision medicine results to providers and patients. Dr. Massart resides in Pittsburgh with her husband, three children and two cats.
Scott Neal, BS
Scott holds a B.S. in Marketing from the University of San Francisco. He has 20+ years marketing experience in the consumer and business to business arenas with 20+ years of residential and commercial construction. As a savvy consumer, Scott is actively involved managing his healthcare potential with his healthcare partner / doctors. He encourages and motivates those he comes in contact with to become the captain of their health and live the life they choose.
Zarifa Roberson, MS
Born and raised in Philadelphia, Pennsylvania, Zarifa Roberson was born with Arthrogryposis Multiplex Congentia (AMC). It is a genetic birth defect and it is considered a rare disease. Arthrogryposis happens out of 1 of 3,000 births. AMC it is a form of arthritis that affects the muscles and joints throughout the body. Zarifa was born with clubbed feet and clubbed hands, dislocated hips, and a lock jaw. She had multiple surgeries and therapies throughout childhood into adulthood.
Despite having a disability, Zarifa graduated from Millersville University with a Bachelor degree in Speech Communication with a minor in African American Studies in 2001 and a Master degree in Rehabilitation Counseling from Coppin State University in 2008. She has over 20 working experience in the disability community such as VR State Agencies, Residential Counselor, Mobile Therapist, Entrepreneur, etc. Zarifa Roberson currently works for PA State – Office Of Vocational Rehabilitation (OVR), Manage Your Business, LLC (MYB) and Weight Watchers (WW).
As entrepreneur with a disability, Zarifa works as a motivational speaker on the platform of Sexuality VS Disability where she educates and bring awareness to society about sexuality in the disability community. Through her platform, she has established Disability Awareness Month (DAM) in the state of Pennsylvania, created panel discussions on the intersections of black and disabled on various topics such as Black College Students with Disabilities, Black, Greek & Disabled, Black Professionals with Disabilities, etc. Lastly, Zarifa is working on creating a shoe line that is accessible but fashionable for women with disabilities. Her ultimate goal is to be the 1st Black Woman With A Disability to the break norm in the white male dominated business industry by producing products/services for the disability community.
Miriam Schachter, PhD
Miriam Schachter received her bachelors’ degree in Biology from Yeshiva University’s Stern College for Women and subsequently received her PhD in Biomedical Sciences from the Icahn School of Medicine at Mount Sinai. Her research concentrated on cell growth and cell cycle control. She began work in the New Jersey Newborn Screening Laboratory as the Ronald H. Laessig Memorial Newborn Screening Fellow at the New Jersey Newborn Screening Laboratory in March 2015. The post-doctoral Fellowship, which is sponsored by the Centers for Disease Control and Prevention (CDC) and the Associate of Public Health Laboratories (APHL), was focused on expanding the molecular resources of the New Jersey Newborn Screening Laboratory. In 2017, she took the position of Research Scientist for the New Jersey Newborn Screening Laboratory, where her main goals were research and development of new molecular assays for the laboratory. In 2021, she became the Program Manager for the New Jersey Newborn Screening Laboratory, where she is responsible for all daily operations and planning for future expansion of the laboratory.
Elinor Langfelder-Schwind, MS, CGC
Elinor Langfelder-Schwind received her B.S. in Biology and Society from Cornell University, M.S. in Human Genetics from Sarah Lawrence College, and certification from the American Board of Genetic Counseling. Elinor began her career in CF genetics at the Ethical, Legal, and Social Implications Program of the National Center for Human Genome Research (now NHGRI) where she helped to coordinate pilot studies on implementing CF carrier screening in the general population. She has devoted her career to working with adult and pediatric patients as a genetic counselor in accredited CF Centers, initially at St. Vincent’s Hospital in New York City, and she currently holds the position at Mount Sinai Beth Israel. Elinor is an active participant in the New York State CF newborn screening consortium, National Society of Genetic Counselors’ CFTR Spectrum Disorders Special Interest Group, and first author of the NSGC Practice Recommendations on CF screening. She is involved with CFTR gene modulation and other research studies about the care and treatment of people with CF. Elinor educates genetic counseling students from Sarah Lawrence College and Icahn School of Medicine at Mount Sinai as a clinical training site coordinator, thesis advisor, and lecturer. Elinor has been an advocate of educating patients, professionals and the public about CF newborn screening, developed CF NBS educational materials for New York State, served on the workgroup for the CF Foundation’s Newborn Screening website content development, and was an adjunct member of the CLSI Newborn Screening working group. She served as principal investigator of a CF Foundation-funded screening improvement project to develop consensus recommendations about improving access to genetic counseling in CF newborn screening, and will be embarking on a stakeholder assessment to investigate feasibility of CF genetic counseling via telehealth.
Natasha Shur, MD
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. This past year, she has had the honor of co-leading the New York Mid-Atlantic Caribbean (NYMAC) regional genetics network’s DC committee, which focuses on improving access to genetics care focused on underserved communities.
Dr. Shur’s publications have focused on three major areas: telemedicine models of care, clinical work for underserved populations and patients with rare disease, and multidisciplinary articles involving child protection. Recent articles where she served as first author, senior author, or provided major contribution over the last two years include: In the American Journal of Medical Genetics, Rapid deployment of a telemedicine care model for genetics and metabolism during COVID-19. ; Use of dexamethasone in idiopathic, acute pediatric rhabdomyolysis ; Mucopolysaccharidosis type I newborn screening: Importance of second tier testing for ethnically diverse populations; and in Current Opinion of Pediatrics: Genetic consultations in cases of unexplained fractures and haemorrhage: an evidence-based approach.
Lloyd Sirmons, BS
Lloyd Sirmons received his Associates Degree in Computer Science from Columbus State University 1998. He immediately began his IT career working with TSYS of Columbus, GA where he worked as a mainframe programmer. He worked a number of years with Columbus Regional as a System’s Analyst before entering into full time ministry where he served in pastoral leadership for nearly fourteen years before joining the GPT team in August of 2010 as the BTOP Project Director. He completed his BS degree in Interdisciplinary Studies from Liberty University in 2009. With over ten years of experience in the Telehealth field, Lloyd brings a sound knowledge of IT solutions, along with strong leadership and communication skills as the Director of the Southeastern Telehealth Resource Center.
Beth A. Tarini, MD, MS
Beth A. Tarini, M.D., MS, is an Associate Professor of Pediatrics (George Washington University) and the Associate Director of the Center for Translational Research at Children’s National Hospital where she conducts health services research that focuses on optimizing the delivery of genetic services to families and children, particularly through newborn screening. Dr. Tarini’s research has been funded by the NIH, HRSA, the RWJ Foundation and the Cystic Fibrosis Foundation. She has been actively engaged in NBS policy at the state and federal level having served as Chairwoman of the Michigan NBS Quality Assurance Advisory Committee, Chairwoman-elect of the Iowa Congenital and Inherited Disorders Advisory Committee and an appointed member of the Advisory Committee on Heritable Disorders in Newborns and Children, a committee which advises the Secretary of the U.S. Department of Health and Human Services on the most appropriate application of universal newborn screening tests, technologies, policies, guidelines and standards. Dr. Tarini currently serves as the President of the Society for Pediatric Research.
Alissa Terry, ScM, CGC
Alissa Terry is a board-certified Genetic Counselor in New York State and has been working with the federally funded New York Mid-Atlantic Caribbean (NYMAC) Regional Genetics Network for the past 6 years. Currently, Alissa serves as the Project Manager and Telegenetics Navigator for NYMAC. Alissa received her BA in Biology from Cornell University in 2002, and her ScM in Genetic Counseling from Johns Hopkins University in 2006. Alissa has worked in various capacities for the Genetic Counseling Program at the Ferre Institute since 2006. She speaks at many local, regional, and national educational events about telegenetics, genetic services, collaboration, and access to care. Recent talks include meetings for the National Society of Genetic Counselors, the Mid-Atlantic Telehealth Resource Center, the Westchester Institute for Human Development, Montefiore Hospital, Family Voices, and various webinars.
Alexander Whitaker, MD, FAAP
Alex Whitaker MD FAAP is a general pediatrician who is on faculty at the University of Maryland School of Medicine. He did his medical training at the Jacobs School of Medicine at the State University of New York at Buffalo. He then did his pediatrics residency at the University of Maryland Medical Center in Baltimore. Currently he practices both outpatient and inpatient pediatric medicine, in addition to staffing a clinical genetics practice. His interests include increasing patient access to genetics services and improving pediatric sepsis outcomes in hospitalized patients.
Kathy Hsu Wibberly, PhD
Kathy is Director of the Mid-Atlantic Telehealth Resource Center (MATRC). TRC’s are 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 and faculty member at the Healthy Appalachia Institute. For over a decade, Kathy also served as adjunct faculty in the L. Douglas Wilder School of Government and Public Affairs at Virginia Commonwealth University (VCU) where she taught Research Methods. Kathy’s public service career reflects over 30 years of experience in public health, public policy, program development, program evaluation and strategic planning. Kathy is an Appointed Member and Chair of the Rural Health Committee for the Universal Service Administrative Company (USAC) Board and is Vice President of the Virginia Telehealth Network Board. In her not so copious free time, Kathy enjoys playing competitive volleyball, recreational softball and trying her hand at wildlife photography.