NYMAC 2024 Virtual Conference – Presenter Bios

Pattie Archuleta is the Project Director for the Family Engagement and Leadership in Systems of Care (FELSC) project at Family Voices. She previously served as the Family-to-Family Health Information Center Project Coordinator at the Parents’ Place of Maryland, Family Engagement and Leadership Training Manager at Maryland Coalition of Families, and Program Chief for Title V Children and Youth with Special Health Care Needs at the Maryland Department of Health. Pattie has contributed to academic journals, including Epilepsia and the Journal of Developmental & Behavioral Pediatrics, and holds a degree in Communications from Prescott College. She is the proud parent of a young adult son with autism spectrum disorder and a history of intractable epilepsy which was successfully treated with the ketogenic diet. Pattie has a passion for family leadership/empowerment and systems change. She has worked for over two decades on local, state, and national initiatives to develop, implement, and manage programs focused on raising family voice and aimed at improving systems of care for children and youth with behavioral and/or special health care needs.

Dr. Brosco is a pediatrician and historian who serves as the Director for the Division of Services for Children with Special Health Needs (DSCSHN) in the Maternal and Child Health Bureau (MCHB) within the Health Resources and Services Administration (HRSA). He also teaches and practices general pediatrics and developmental-behavioral pediatrics at the University of Miami Miller School of Medicine, where he contributes to scholarship through UM’s Institute for Bioethics and Health Policy. For two decades, Dr. Brosco held a series of leadership positions in the Florida Department of Health, including Title V CYSHCN Director and Deputy Secretary of Health. Appointed MCHB’s DSCSHN Director in 2022, Dr. Brosco leads an interdisciplinary team tasked with ensuring that every child in the U.S. receives the medical care and family support they need to play, go to school, and grow up to be healthy and productive adults.

Fred is a workplace team trainer and improvisational theater artist. As a facilitator, he has led workshops in team-building and leadership presence for organizations including the Johnson Business School at Cornell University, Wharton School of Business at the University of Pennsylvania, and Google. His creative work focuses on group collaborative processes and co-created performance. Fred has a MFA from the Pig Iron School for Advanced Performance Training and a BA in Classical Philology from Harvard University.

Cheyla Clark is a board-certified genetic counselor who specializes in genetic counseling for patients (both adults and children) who are at risk for hereditary cancer syndromes. 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 working in 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 mentorship. She also has a passion for genetics and genetics outreach. She has been a part-time project manager for NYMAC since November 2021.

Maria Isabel Frangenberg is a Diversity and equity professional. She has worked extensively to improve meaningful access to education and healthcare for Latino recent immigrants and other under-served populations. She is currently the co-executive director of Bacatá Global Engagement Firm, LLC, where she guides organizations as they move to meaningfully engage under-served communities, to open access to equitable healthcare and education. Maria Isabel holds a LEND (Leadership Education in Neurodevelopmental Disabilities) Certificate from Virginia Commonwealth University, where she was the first parent of a child with special health care needs to be invited into the program. Later on, she became LEND faculty, teaching Interdisciplinary Teamwork.  Concurrently, Maria Isabel worked at the Virginia Commonwealth University Center for Excellence in Neurodevelopmental Disabilities (UCEDD) and the Family to Family Health Information Center (F2F HIC) spearheading outreach and engagement efforts to the Latino and other immigrant communities. She holds a Bachelor of Arts in Philosophy and Political Science from the University of North Carolina at Chapel Hill. Maria Isabel loves the outdoors and when she’s not in her office, you can count on finding her somewhere outside with her family and friends. She is a native Spanish speaker from Colombia, and is fluent in English following her 30 years of living, studying, parenting and working in the United States. 

Rhonda Jackson is a Public Health Advisor with the Health Resources and Services Administration (HRSA), Office of Intergovernmental and External Affairs (IEA). Rhonda has a broad knowledge of HRSA programs and has worked with grantees and community partners to support the development and improvement of health care systems.  Rhonda has previously served as a Public Health Advisor with the Office of the Assistant Secretary of Health (OASH), and as a Regional Maternal and Child Health (MCH) Consultant with the HRSA Maternal and Child Health Bureau. Rhonda received both her BA in Social Work and MSW from the University of Pittsburgh.

In 2005 Coral became a mother for the first time. Her son was born with multiple conditions, microcephaly and deafness among others. The birth of Felix changed her life forever. From this moment, as she proudly called herself, she became FELIX MOM. Coral participated as a volunteer in organizations, school, and others, trying to cope with the multiple conditions and challenges that came with the changes that she was facing. She was very focused in trying to create awareness about the challenges of the CSHCN and their families. Since 2009, she has worked as a Family Representative for CSHCN in Puerto Rico Title V. Her duties include the coordination of services, family to family support, design and implementation of work plans and many more. She is one of the leaders of the PR NYMAC Team. Coral offers workshops for families and staff, professionals, and the community about the impact of having children with special needs, experiences of families and trying to create awareness and promote family inclusion at all levels. She has participated locally and with organizations and agencies in the states. Since the birth of her son, Coral’s life revolves around his needs as well as those of other children and their families.

Enrique Lopez is a board-certified genetic counselor working in New Jersey. He is originally from Brazil and completed his education in genetic counseling at Rutgers, The State University of New Jersey-New Brunswick. Enrique currently works as a prenatal genetic counselor in an underserved community and provides services in Spanish and Portuguese. He is also the chair of the DEIJ committee through ABGC. He is interested in providing services to underserved communities, especially those of Spanish-speaking origin and to expand genetic counseling services to communities who don’t have these services. He has been a part-time consultant for NYMAC since November of 2021 and he primarily centers his efforts on the Puerto Rico team.

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 Global Health’s U.S. based. 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. 

Erica Marx, M.S., is an Executive and Team Coach who works with teams and leaders to create positive, creative, and collaborative organizations, specializing in working through times of organizational change and rapid growth. She is a PCC certified professional coach through the International Coach Federation (ICF), a NYS certified conflict mediator, and a board member of the International Applied Improvisation Network. She completed her B.S. at Cornell University and has a Master’s in Interdisciplinary Ecology from the University of Florida.

Marybeth McAfee, MA, is trained as a genetic counselor but has spent the last part of her career in non-clinical roles, helping rare disease patients find information, specialists, and researchers, managing rare disease information websites, and empowering rare disease patient organizations to become involved in therapy development pathway. Marybeth joined the National Organization for Rare Disorders (NORD) in 2021 to work closely with Edward Neilan, MD, PhD, NORD’s Chief Medical and Scientific Officer, to lead the NORD Rare Disease Centers of Excellence (RD CoE) Program. Marybeth is privileged to facilitate conversations, collaborations, and projects addressing gaps in rare disease diagnosis, care, research, and medical training with the NORD RD CoE Directors, Associate Directors, program managers, and 330 members across twelve working groups.

Donna Messersmith, PhD, is a Provider Education Specialist in the Education and Community Involvement Branch of the Division of Genomics and Society at the National Human Genome Research Institute. In this role, she facilitates the creation and dissemination of a variety of different types of genomic educational resources with a particular emphasis on outreach to healthcare practitioners. She leads subject matter experts from several healthcare disciplines to collaborate on the creation, dissemination, and evaluation of genomics educational resources through the NHGRI Inter-Society Coordinating Committee for Practitioner Education in Genomics, or ISCC-PEG (genome.gov/iscc-peg). Trained as a researcher in the biomedical sciences, Dr. Messersmith’s current research interests focus on evaluating genomic literacy among healthcare practitioners and the integration of genomic medicine into practice.

Shruti Mitkus is the Director of Genetic Education and Navigation at Global Genes and has over 20 years of experience in human molecular genetics. She earned her doctorate in Human Genetics and completed her post-doctoral training at the National Institute of Mental Health. After working in the areas of clinical genetic diagnostics for rare diseases, Shruti transitioned to genetic education and patient advocacy. In her current role, Shruti manages patient and community-based educational initiatives and helps rare disease patients understand the genetics of their disease. Shruti also oversees Global Genes’ patient navigation service (RARE Concierge) that aims to provide information, resources and connection to patients, caregivers, advocates, researchers and anyone on the rare disease journey. While Shruti loves the science of genetics, she is most passionate about translating her knowledge to make genetics more accessible. She is an ardent believer in the power of education to empower and ultimately improve the lives of rare disease patients.

Doson joined NRHA staff in 2023. He represents the rural health care policy and programmatic interests of NRHA with the U.S. Congress. As a prior-service Army Combat Medic and a veteran of Operation Enduring Freedom, Doson has more than a decade of health care experience. After deployment, Doson earned an A.S. in health science and a B.S. in pre-medical biology. During this time, he worked in rural health as a phlebotomist, and an EMT, and interned at the U.S. Department of Agriculture’s Human Nutrition Research Center, where he helped to conduct research on how diet and exercise influence energy metabolism. While in law school, Doson was a leader in the development of a medical technology accelerator at Northeast Ohio Medical University and completed a judicial externship at the U.S. Court of Federal Claims. Prior to his role at NRHA, Doson served as a HillVets Congressional Fellow in the Office of U.S. Senator Lisa Murkowski, where he consulted on contemporary health care policy and advised on legislation before the Senate Committee on Health, Education, Labor, and Pensions.

With God first in her life, Mrs. Germaine Powell continues to keep her sights above the clouds with the belief that God is leading her in the direction that she needs to be. She obtained her Bachelor of Arts degree in Elementary Education and her Master of Arts degree in Education Administration/ Supervision from the University of the Virgin Islands and was also certified by the Virgin Islands Board of Education as an Assistant Principal. Mrs. Powell also has a diploma as a Legal Assistant from the International Correspondence School. She recently retired from the Government of the Virgin Islands after 34 years of service. Mrs. Powell is very active in the community. She holds the positions of President of the Virgin Islands Sickle Cell Parent Support Group, Faith Sabbath School head superintendent, St. Croix Children’s ministries coordinator, Adventist Development and Relief Agency (ADRA) board member, Red Cross volunteer the archery club and also assist in many other community organizations.

Melissa Raspa, PhD is a Senior Director at RTI International where she conducts translational genetics work and directs the GenOmics and Translational Research Center. She has been working with the federally funded New York Mid-Atlantic Caribbean (NYMAC) Regional Genetics Network since 2015 and serves as the Evaluation and Data Collection lead. Melissa received her BA in Psychology from Franklin and Marshall College, and her MA and PhD in Special Education from the University of North Carolina at Chapel Hill.

Lisa Richard is the Southwest Regional Network Coordinator and the Rural Outreach Specialist at the Center for Family Involvement at Virginia Commonwealth University. She supports caregivers and families living with disability across the lifespan in southwest and rural Virginia. She is the parent to seven children including two adult children with intellectual disabilities and has lived experience navigating disability systems in rural communities. Lisa has a Bachelor’s in Healthcare Administration and her Master’s in Sociology from VCU. She is currently pursuing a certificate in Leadership Education in Neurodevelopmental Disabilities as a Va-LEND Trainee.

Roseani, for the last eight years, has dedicated her time to family engagement. Over that time, she supported families of children with special needs to access health services and education appropriate for their needs. With more than a decade of direct work with children with autism and related disorders, she has supported families to improve access to services and participation during the process. She is currently a Program Director at Family Voices National, where she focuses on organizational development across different projects that support underserved communities, inclusion in all aspects of family engagement, cultural adaptation of resources, and family-centered practices. She is a native Spanish speaker from Puerto Rico and a mother of twin boys. She has a Master’s in Curriculum and Instruction from Arizona State University, Specializing in Autism from Complutense University in Spain, and a Bachelor’s degree in Psychology and Mental Health from the University of Puerto Rico.

Radhika Sawh is a board-certified genetic counselor working in New York State.  She earned a dual BS in Biology and Psychology from Boston College and a MS in Human Genetics from Sarah Lawrence College.  Radhika is currently the Continental States Team Lead for NYMAC and also serves on the faculty of the Joan H. Marks Graduate Program in Human Genetics at Sarah Lawrence College.  Prior to joining NYMAC, Radhika worked in the clinical setting at a high volume prenatal center and in the non-profit sector as the National Director of Patient Services for the Cooley’s Anemia Foundation.  Radhika is passionate about outreach and advocacy, with a particular interest in the Hemoglobinopathies  

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 twelve 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.

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, and her ScM in Genetic Counseling from Johns Hopkins University. Alissa has worked in various capacities for the Genetic Counseling Program at the Ferre Institute since 2006.

Mabel Thomas, MS, CGC is a Licensed Board-Certified Genetic Counselor by the American Board of Genetic Counselor (ABGC) with a master’s degree from the Joan H. Mark Graduate Program in Human Genetic at Sarah Lawrence College.  With over a decade of clinical experience providing clinical genetic care, she has worked at private practice, hospital, government, clinical commercial laboratory, and non-profit organizations. As a native Spanish speaker, she is passionate about providing meaningful and in-depth genetic counseling services to the Spanish speaking communities.  Her latest collaborative endeavor with the New York Mid-Atlantic Caribbean (NYMAC) Regional Genetic Network involves providing in-person and tele-genetic counseling services to the population of Puerto Rico. She has also engaged with the National Society of Genetic Counselors (NSGC) and local Puerto Rican stakeholders to pursue genetic counseling recognition and licensure at the state level.  As a member of the NYMAC Puerto Rico team, Mabel has presented at the 42 Annual NSGC Conference to share the latest achievements by NYMAC in Puerto Rico. Mabel’s ambition is to contribute to the advancement of a sustainable infrastructure that supports genetic counseling services in Puerto Rico.

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. 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.

Marc S. Williams, MD, FAAP, FACMG, FACMI is a clinical geneticist and research scientist. He is professor and director emeritus of Geisinger’s Department of Genomic Health. He has worked for over 30 years is integrated healthcare delivery systems serving large rural populations. He is on the NHGRI Genomic Medicine working group. He was a member of the Secretary’s Advisory Committee for Genetics, Health and Society. He is past president of the American College of Medical Genetics and Genomics. He is past chair of the ACMG Committee on the Economics of Genetic Services and founded the ACMG Quality Improvement Special Interest Group. He is a member of the Scientific Advisory Boards of the Clinical Pharmacogenetic Implementation Consortium (CPIC), the NIH Undiagnosed Diseases Project, and Online Mendelian Inheritance in Man. He has authored over 250 articles on a variety of topics including the economic evaluation and value of genetic services, implementation of genomic medicine, and the use of informatics to facilitate genomic medicine and precision health.