Speakers

Tolúwalàṣẹ “Làṣẹ” Ajayi, M.D., FAAP

Division of Geriatrics, Gerontology, and Palliative Care Physician

Dr. Tolúwalàṣẹ “Làṣẹ” Ajayi, M.D. FAAP, is a physician in the Division of Geriatrics, Gerontology, and Palliative Care in the Department of Medicine and in the Division of Pediatric Hospital Medicine in the Department of Pediatrics at the University of California San Diego. She serves as the Program Director of the joint UC San Diego & Scripps Health Hospice & Palliative Medicine Fellowship and the Digital Health Equity Lead in the Joan & Irwin Jacobs Center for Health Innovation. She is the PI of the PowerMom research study.

As Faculty for many years and now as Director, Dr. Ajayi is dedicated to expanding the benefits of palliative care across all ages, as well as improving communication with seriously ill patients and leveraging advances in digital medicine to improve pain assessment and care. She is particularly interested in how palliative care can improve the quality of life for those with chronic pediatric disease who are now living well into adulthood. Her research focuses on opportunities at the intersection of novel digital medicine technologies and unmet needs in maternal fetal health as well as pain and palliative medicine. She hopes to further investigate how mobile health can provide real time, patient reported outcomes that can be rapidly integrated into individualized clinical plans to improve health related quality of life and increase participation of pregnant women and their newborn in clinical research. With these efforts, she hopes to diversify the standard of care provided to pregnant women and augment how we manage the symptoms prevalent in serious illness, with the goal of reducing health disparities across the life span.

Cynthia Bell, Ph.D., R.N.

Nurse Scientist

Cynthia Bell Ph.D., R.N. is a nurse scientist at Corewell Health West in Grand Rapids, Michigan. Her clinical expertise in caring for adolescents and young adults (AYA) living with advanced cancer in acute care settings and providing palliative and end-of-life care to patients at home inspired her program of research. Dr. Bell has advanced the theoretical understanding of readiness to talk about palliative care and end-of-life topics using qualitative and case study research methods, resulting in a Readiness conceptual model. She developed the Ready-to-Talk Measure (R-T-M) from in-depth semi-structured interviews with seriously ill AYAs to help clinicians identify a young person’s readiness to engage in clinical conversations. The R-T-M, which captures the dynamic construct of readiness across three domains (awareness, acceptance, and willingness) has been validated by AYA stakeholders and oncology and palliative care researchers/clinicians. Dr. Bell’s research supports ongoing clinical conversations that respect a young person’s hopes and dreams for the future, while addressing the uncertainties of advanced disease, palliative care, and end-of-life decisions.

Jori F. Bogetz, M.D.

Assistant Professor of Pediatrics

Jori F. Bogetz, M.D., is an Assistant Professor of Pediatrics at the University of Washington School of Medicine, the Associate Director of Research at the Treuman Katz Center for Pediatric Bioethics and Palliative Care, and an attending physician in pediatric palliative care at Seattle Children’s Hospital. Dr. Bogetz completed her pediatric residency and an Academic General Pediatrics Fellowship at Stanford University and a Pediatric Hospice and Palliative Medicine Fellowship at MGH/Harvard University/Boston Children’s Hospital. Her research focuses on improving care for children with severe neurological impairment and their families through interventions that support high quality communication and family-centered care. Dr. Bogetz has received funding for her research from the National Institutes of Health Eunice Kennedy Shriver National Institute of Child Health and Human Development, the Cambia Health Foundation, the National Palliative Care Research Center, the Seattle Children’s Research Institute, and the Lucile Packard Foundation for Children’s Health.

Renee Boss, M.D., M.H.S.

Professor of Pediatric Palliative Care
Associate Professor of Pediatrics

Dr. Renee Boss is the Rembrandt Foundation Professor of Pediatric Palliative Care and an associate professor of pediatrics at the Johns Hopkins University School of Medicine. She is also core faculty at the Berman Institute of Bioethics. Her areas of clinical expertise are neonatology, pediatric palliative care, and bioethics. Dr. Boss’s research focuses on family-clinician communication and decision-making related to serious pediatric illness. She has published more than 100 articles and chapters on these topics, and her research has been funded by the NIH and the National Palliative Care Research Center.

After receiving her medical degree from Boston University School of Medicine, Dr. Boss completed her residency in pediatrics at the University of Arizona College of Medicine. She performed her neonatology fellowship at the Johns Hopkins School of Medicine.

Dr. Boss is a member of the Executive Committee of the Section of Hospice and Palliative Medicine at the American Academy of Pediatrics.

Alison Cernich, Ph.D., ABPP-Cn

Deputy Director of NICHD

Dr. Alison Cernich is the Deputy Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) and works to support the Institute’s mission to lead research and training to understand human development, improve reproductive health, enhance the lives of children and adolescents, and optimize abilities for all. Prior to this position, Dr. Cernich was the Director of the National Center for Medical Rehabilitation Research (NCMRR) at NICHD, Deputy Director of the Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury in the Department of Defense, and multiple roles in the Department of Veterans Affairs. She received her doctoral degree in Clinical Psychology from Fairleigh Dickinson University and completed post-doctoral training in cognitive neuroscience at the National Rehabilitation Hospital in Washington, DC. She is a board-certified neuropsychologist and is the lead or contributing author on multiple peer-reviewed articles and conference presentations, with an emphasis on disability and pregnancy, traumatic brain injury and computerized neuropsychological assessment.

Danielle DeCourcey, M.D., M.P.H.

Physician in Pediatric Critical Care Medicine

Dr. Danielle DeCourcey, M.D., M.P.H., is an attending physician in Pediatric Critical Care Medicine at Boston Children’s Hospital where she serves as the Associate Division Chief of Medical Critical Care. Her research interests are centered around improving processes of care for children with chronic critical illness and medical complexity, with a focus on serious illness communication and advance care planning for this population. She currently serves as the chair of the Society for Critical Care Medicine’s Pediatric Palliative Care Subcommittee.

Sabrina Derrington, M.D., M.A., HEC-C

Director, Center for Bioethics at Children’s Hospital Los Angeles
Associate Professor of Clinical Pediatrics, Keck School of Medicine at USC
Director of Research Ethics, Southern California Clinical Translational Science Institute

Sabrina Derrington is the Inaugural Director of the Center for Bioethics and an Attending Physician in Critical Care Medicine at Children’s Hospital Los Angeles (CHLA) and Associate Professor of Clinical Pediatrics at USC Keck School of Medicine. In addition to her work in bioethics and pediatric critical care, she also practiced as a palliative care consultant for nearly 10 years. She is a past-chair of the Society for Critical Care Medicine’s Pediatric Palliative Care Committee, current co-chair of SCCM’s Ethics Committee, and co-chair of an expert panel updating SCCM’s guidelines on pediatric end-of-life care. She is also the current Secretary and a member of the Executive Board of Directors for the American Society for Bioethics and Humanities. Her published work involves many of the intersections of bioethics, palliative care, and critical care for children, including shared decision-making with parents, prognostic communication, controversies in death by neurologic criteria, and overcoming barriers to equitable end-of-life care.

Dr. Derrington received her medical degree from the University of California, Davis, and a master’s degree in Bioethics and Health Policy from Loyola University Chicago. She completed her residency in pediatrics and a fellowship in pediatric critical care at Children’s Hospital Los Angeles. She has won numerous teaching awards and has presented and authored more than 70 lectures, reviews, book chapters, reports and other publications.

James A. Feinstein, M.D., M.P.H.

Associate Professor of Pediatrics, University of Colorado School of Medicine
Clinical Research Director, Section of General Academic Pediatrics
Pediatric Director, Children’s Hospital Colorado Epidermolysis Bullosa Program

James A. Feinstein is a primary care pediatrician for children with special healthcare needs and a NIH-funded physician-scientist committed to advancing pediatric medication safety research and mentoring the next generation of T3/T4 researchers. As a fellowship-trained health services researcher with over 15 years of experience, I have led multiple epidemiological and health services research studies focused on children with medical complexity and, in particular, on symptom measurement and management for children exposed to polypharmacy.

Chris Feudtner, M.D., Ph.D., M.P.H.

Division Chief

Chris Feudtner, M.D., Ph.D., M.P.H., is chief of the Division of General Pediatrics, a clinical investigator, and ethicist at Children’s Hospital of Philadelphia and the University of Pennsylvania who focuses on improving the lives of children with complex chronic conditions and their families. Over the years, he has conducted a wide variety of research projects and been involved in developing clinical programs while also taking care of complex pediatric patients, including providing palliative care as well as providing clinical ethics consultations. He lives outside Philadelphia with his wife (a family physician) and three children.

Rohan Hazra, M.D.

Director, Division of Extramural Research

Dr. Rohan Hazra was named the director of the Division of Extramural Research (DER) in March 2022, after serving as the division’s acting director since February 2020. Prior to becoming acting DER director, he was chief of the NICHD Maternal and Pediatric Infectious Disease Branch. He provided scientific leadership for domestic and international research, research training, and career development programs related to the epidemiology, diagnosis, pathogenesis, transmission, treatment, and prevention of HIV and its complications as well as other selected pathogens in infants, children, adolescents, and pregnant people. Prior to joining NICHD in 2007, he conducted clinical studies in pediatric HIV in the National Cancer Institute’s intramural program.

Dr. Hazra’s research interests include studying the long-term effects of HIV and its treatment on children, adolescents, and young adults who acquired HIV as infants. His research interests also include clinical trials of new antiretroviral medications and treatment strategies for children with HIV, especially in resource-limited countries.

Dr. Hazra received his bachelor’s degree in biology from Yale University and his medical degree from the Johns Hopkins University School of Medicine. Following graduation from medical school, he completed a pediatric residency and pediatric infectious disease fellowship at Children’s Hospital in Boston. He is certified by the American Board of Pediatrics in both pediatrics and pediatric infectious diseases.

Pamela S. Hinds, Ph.D., R.N., FAAN

Director of the Department of Nursing Science, Professional Practice, and Quality

Dr. Hinds is the Director of the Department of Nursing Science, Professional Practice, and Quality, the William and Joanne Conway Endowed Chair in Nursing Research, the Research Integrity Officer, and the Interim Director for the Center for Translational Research at Children’s National Health System in Washington, D.C., and a Professor of Pediatrics at the George Washington University, School of Medicine and Health Sciences in Washington, D. C. She is an adjunct professor for the University of Pennsylvania, School of Nursing, Johns Hopkins University, School of Nursing, the University of Maryland, College of Nursing, and the Fudan University of Shanghai, China. For more than three decades, Dr. Hinds has created and led research related to the pediatric cancer experience, quality of life, fatigue and altered sleep during the treatment of pediatric cancers, and end-of-life communication and decision making. She has served on the Institute of Medicine (IOM) committee on end-of-life and palliative care for children in America (2003) and the National Quality Forum panel on palliative and end-of-life care in America, the Institute of Medicine (IOM) committee on Dying in America (2014) and on the National Academies of Sciences, Engineering and Medicine Roundtable on Quality Care for People with Serious Illness (2016-2022), and the NCI Moonshot Tolerability Steering Committee (2019-present). Dr. Hinds is an Oncology Nursing Society Distinguished Nurse Researcher and the Association of Pediatric Oncology and Hematology Distinguished Nurse Researcher and is the Editor-in-Chief for the journal, CANCER NURSING: An International Cancer Journal and the open access journal, Cancer Care Research Online. She is the 2020 recipient of the HPNA Distinguished Nurse Researcher Award in Palliative Care and the 2020 Nightingale Award from the American Nurses Association and the Washington Post.

Khaliah Johnson, M.D.

Division Chief

Khaliah Johnson received her medical degree at Stanford University in Palo Alto, CA in 2007. She then went on to train in General Pediatrics at the Johns Hopkins Hospital in Baltimore, MD. Her desire to serve children and families facing complex, life-threatening illness led her to pursue fellowship training in Pediatric Palliative Care at the Children’s Hospital of Philadelphia. Upon completing fellowship in 2012, Dr. Johnson joined the Pediatric Advanced Care Team at Children’s Healthcare of Atlanta to help expand pediatric palliative care services available to children in Georgia. She now serves as Division Chief for Pediatric Palliative care at Children’s Healthcare of Atlanta and Emory University’s Department of Pediatrics and spends part of her clinical time at Grady Medical Center, providing palliative care at the largest pediatric HIV clinic in the United States. Dr. Johnson’s particular career interests are in community-based pediatric care, health equity, healthcare advocacy, and developing strategies to improve access to high-quality palliative care services to marginalized populations. Dr. Johnson was prestigiously named a Cambia Health Foundation Sojourns Scholar in 2021, where her work focuses on addressing racism in pediatric serious illness. Her commitment to serving the underserved extends beyond her roles at Emory and Children’s Healthcare of Atlanta, as she consistently remains engaged in outreach to youth and the homeless through volunteer efforts and church ministries and is the founder of the non-profit initiative in rural Kenya, We are Wendo (https://www.wearewendo.com). She is the mother of a spirited seven-year-old boy, Aubrey. Khaliah and her family reside in the Historic West End of Atlanta.

Barbara L. Jones, Ph.D., M.S.W.

Dean Barbara Jones, Ph.D., M.S.W., FAOSW, is one of the nation’s top scholars in the field of psychosocial oncology and palliative care. She joined BUSSW in 2023 from the University of Texas at Austin where she had been a member of the faculty for nearly twenty years. At UT Austin, Jones served as university distinguished professor, Lockhart Memorial Professor in Direct Social Work Practice, founding director of the Institute for Collaborative Health Research and Practice, and associate dean for health affairs in the university’s Steve Hicks School of Social Work. She was also a distinguished professor and inaugural chair of the Department of Health Social Work at UT Austin’s Dell Medical School – a department she helped build to bridge the social work and medical schools.

A first-generation college student, Jones earned her Ph.D. and M.S.W. in social welfare from the University at Albany (NY) and practiced as a clinical social worker for 15 years. She served from 2004-2011 as core faculty on the Initiative for Pediatric Palliative Care at Boston Children’s Hospital and is currently on the national advisory boards for the Cambia Health Foundation Sojourns Scholars Leadership Program and the American Cancer Society’s Center for Diversity in Research Training. She serves on the national steering committee of the Coalition for Social Work and Health. Her research, which is supported by major grants from the National Institutes of Health and the American Cancer Society, focuses on improving care for children, adolescents, and young adults with cancer and their families.

In addition to co-editing three acclaimed books in oncology and palliative care and publishing more than 120 articles in top-tier journals, Jones is a past recipient of the Association of Pediatric Oncology Social Workers Social Worker of the Year award and was inducted into the American Academy of Social Work and Social Welfare in 2020. She was recently elected to the American Academy of Social Work and Social Welfare Board and became the first social worker to receive the American Cancer Society’s Pathfinder in Palliative Care Award. She is a distinguished scholar and fellow of the National Academies of Practice and a 2023 fellow of the American Psychosocial Oncology Society as well as the Association of Oncology Social Work.

Tammy I. Kang, M.D., MSCE, FAAHPM

Executive Vice-Chair Department of Pediatrics
Professor of Pediatrics, tenured

Tammy I. Kang, M.D., MSCE, FAAHPM is currently the Division chief of Palliative Care, Executive Vice Chair in the Department of Pediatrics and holds the Jan E. Duncan Endowed Chair in Pediatric Palliative Care. Prior to joining Texas Children’s Hospital and Baylor College of Medicine as the inaugural Chief of Palliative Care 2016, Dr. Kang held academic, clinical and administrative appointments at the Children’s Hospital of Philadelphia, Perelman School of Medicine at the University of Pennsylvania. She received her undergraduate degree from Stanford University and medical degree from the University of Colorado Health Sciences Center. She completed pediatric residency and chief residency at the University of California San Francisco and a subspecialty fellowship in Pediatric Hematology/Oncology at the Children’s Hospital of Philadelphia along with a Master’s degree in Clinical Epidemiology from the University of Pennsylvania.

She is board certified in Pediatric Hematology/Oncology and Hospice and Palliative Medicine and a member of the American Pediatric Society. Dr. Kang is a recognized leader nationally and internationally in pediatric palliative care and has assisted numerous academic pediatric palliative care programs in developing sustainable clinical and academic programs. She has served on the Board of Directors for the American Academy of Hospice and Palliative Medicine and a faculty member for the Center to Advance Palliative Care. She is a member of the National Pediatric Palliative Care Task Force and serves on the Supportive and Palliative Care editorial board for the National Cancer Institute. She has published numerous peer reviewed articles, chapters and clinical reviews and has participated nationally in organizations dedicated to improving the care of children with serious illness.

Erica C. Kaye, M.D., M.P.H.

Associate Member and Director of Research in the Division of Quality of Life and Palliative Care

Erica C. Kaye, M.D., M.P.H. is an Associate Member and Director of Research in the Division of Quality of Life and Palliative Care at St. Jude Children’s Research Hospital. Dr. Kaye’s research centers on improving quality of life for children with serious illness and their families, with an emphasis on stakeholder-driven development and testing of clinical interventions to support and promote person-centered communication about prognosis in the setting of advanced childhood cancer. Dr. Kaye has received continuous funding to support her research for more than a decade. She has received national awards and recognition for her scholarship from the National Cancer Institute, the American Academy of Hospice and Palliative Medicine, and the National Palliative Care Research Center. Dr. Kaye is a member of the Society of Pediatric Research, a Fellow of the American Academy of Hospice and Palliative Medicine, and Chair of the American Academy of Hospice and Palliative Medicine Research Committee. She is a faculty educator in the St. Jude Graduate School of Biomedical Sciences, where she teaches qualitative research methods in the Master’s Program in Clinical Investigations and the Global Child Health Master’s Program. Dr. Kaye is also a vocal advocate for gender equity in academic medicine, both at her institution and at a national level. She serves on the Justice, Equity, Diversity, and Inclusion Committee for the Society of Pediatric Research and is Chair of the Advocacy Committee for the American Medical Women’s Association.

Karen Kehl, Ph.D., R.N., FPCN

Health Science Administrator

Dr. Kehl is a Health Scientist Administrator in the Office of End-of-Life and Palliative Care Research (OEPCR) which coordinates NINR’s end-of-life and palliative care initiatives.

Dr. Kehl comes from the University of Wisconsin-Madison, School of Nursing where she was an Assistant Professor. For more than 25 years, Dr. Kehl has specialized in hospice and palliative nursing and has served as a clinician, administrator, educator and researcher. Her research focused on improving the preparation of families for care in the last phase of life in the home hospice setting. Dr. Kehl participated in the Clinical and Translational Science Award program, which involved a KL2 award that supports mentored research career development for clinical investigators beginning translational research. She also served on the Board of Directors for the Hospice and Palliative Nurses Association.

Tracy King, M.D., M.P.H.

Medical Officer

Tracy King, M.D., M.P.H. is a medical officer in NICHD’s Intellectual and Developmental Disabilities Branch (IDDB). She is a board-certified pediatrician with extensive research, clinical, and teaching experience in providing pediatric care for diverse populations.

Dr. King currently oversees the NICHD portfolio on Fragile X syndrome and chairs the NIH Fragile X working group. Her portfolio also includes research on self-injurious behaviors in individuals with IDD; the Ethical, Legal, and Social Implications of IDD research; and Dissemination and Implementation research relevant to IDD conditions. She also has a specific interest in research methods relevant to clinical preventive services for children. She serves as NICHD’s liaison to the U.S. Preventive Services Task Force.

Dr. King earned a bachelor’s degree in biological sciences from Stanford University and a medical degree from Baylor College of Medicine. She completed her pediatric residency training at the Boston Medical Center and Boston Children’s Hospital. She also completed a research fellowship in general academic pediatrics at the Johns Hopkins School of Medicine, during which time she earned a master’s degree in public health from the Johns Hopkins Bloomberg School of Public Health. Prior to joining NICHD in 2015, she served on the leadership team of the Harriet Lane Clinic, the pediatric primary care clinic for the Johns Hopkins Children’s Center, and conducted research focused on improving early identification of children with developmental delays.

Lisa C. Lindley, Ph.D., R.N., FPCN, FAAN

Associate Professor / Faculty Fellow

Dr. Lisa C. Lindley, Ph.D., R.N., FPCN, FAAN is an Associate Professor and Nightingale Endowed Faculty Fellow in the College of Nursing at the University of Tennessee, Knoxville. She received her doctoral degree in nursing from the University of North Carolina at Chapel Hill and master’s degree in business from the University of Wisconsin – Madison. Dr. Lindley is a child health services and policy researchers. Her research focuses on health care systems and policy interventions that promote quality, accessible care for children with serious illness and their families. Her research incorporates data science, advanced statistical approaches, and BigData to test real-world health services and policy interventions. She serves as Principal Investigator for the PedEOL Care Research Group and is the recipient of NIH and AHRQ funding for her research. Dr. Lindley is also an active member of the Hospice and Palliative Nurses Association and American Academy of Nursing.

Valerie Maholmes, Ph.D., CAS

Chief of the Pediatric Trauma and Critical Illness

Dr. Valerie Maholmes is the Chief of the Pediatric Trauma and Critical Illness Branch at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health. The Branch was established to encourage collaborative inquiry in basic, clinical, and translational research to promote discoveries, new treatment paradigms, and interventions that improve the quality of life for children and families who have experienced all forms trauma, life-threatening injury, or critical illness. In her role as Branch Chief, she sets the vision and priorities for research that addresses the continuum of psychosocial, behavioral, biological, and physiological influences that affect child health outcomes in trauma, injury, and acute care. Prior to leading the Branch, Dr. Maholmes served as the program official in the Institute’s Child Development and Behavior Branch where she directed the Social and Affective Development /Child and Family Processes program. In this capacity, she provided scientific leadership on the impact of specific aspects of physical and social environments on the health and psychological development of infants, children, and adolescents.

Kim Mooney-Doyle, Ph.D., R.N., CPNP-AC

Assistant Professor, University of Maryland School of Nursing

Kim Mooney-Doyle is an assistant professor in the Department of Family and Community Health at the University of Maryland School of Nursing. She received her BSN from Boston College and MSN, Ph.D., and post-doctoral training at the University of Pennsylvania. Her program of research describes the impact of pediatric serious illnesses on families; evaluates contextual factors, such as social determinants, that influence child and family health; and addresses these challenges to family health through community partnership for intervention development. Dr. Mooney-Doyle’s goal, to enhance family health and family health equity, is informed by her clinical experiences as a pediatric oncology and community health nurse.

Katie Moynihan, M.B.B.S.

Physician and Assistant Professor of Pediatrics

Dr. Katie Moynihan is a staff physician in the Cardiac Intensive Care Unit at Boston Children’s Hospital and Assistant Professor of Pediatrics, Harvard Medical School. She studied medicine and completed her pediatric and critical care training in Australia and New Zealand. She undertook clinical volunteer work in Uganda, India and Fiji and has an ongoing commitment to quality improvement and teaching in low- and middle-income countries. After completing a senior fellowship at Boston Children’s Hospital, she joined as faculty in 2018. Her research interests focus on social determinants of health and healthcare access and outcomes in pediatric critical illness as well as ethics and decision-making – particularly in relation to life-sustaining devices, and palliative care integration in the CICU. Dr. Moynihan is currently undertaking a Ph.D. examining equity and ethics in pediatric critical care through the University of Sydney.

Tessie October, M.D., M.P.H.

Medical Officer

Tessie October, M.D., M.P.H., is a pediatric intensive care and hospice and palliative care medicine physician who joined PTCIB as a medical officer in 2020. In this role, she serves as a program official for the pediatric critical care program, which includes research and training in pediatric critical care medicine, trauma, and injury.

Prior to joining NICHD, Dr. October was a clinical scientist with research interests in teaching communication skills to clinicians and supporting families through decision-making during critical illness and end-of-life care. She continues to provide clinical care to critically ill children.

Dr. October earned her medical degree from the University of Washington School of Medicine in 2001. At Columbia University, she completed her pediatric critical care medicine training in 2007 and her master’s degree in public health in 2009. She received board certification in hospice and palliative care medicine in 2012.

Erin Talati Paquette, M.D., J.D., M.Be.

Associate Professor in the Northwestern University Feinberg School of Medicine

Erin Talati Paquette, M.D., J.D., M.Be., is an Associate Professor in the Northwestern University Feinberg School of Medicine Department of Pediatrics and the Northwestern University Pritzker School of Law (by courtesy). She is also an attending physician in Pediatric Critical Care Medicine, Chair of the Ethics Advisory Board, Director of Clinical and Organizational Ethics at the Ann & Robert H. Lurie Children’s Hospital of Chicago, a member of the Steering Committee for the Northwestern University Institute for Public Health and Medicine Center for Bioethics and Humanities, a founding member of the President’s Council for Equity, Diversity and Inclusion, where she co-chairs health equity activities for the hospital, a member of steering committee for the Health Equity and Antiracism Center at Lurie Children’s, and developer and Co-Editor in Chief of the Journal Advocacy.

As a physician, lawyer, bioethicist, Dr. Paquette is committed to interdisciplinary scholarship, integrating empirical findings into policy and practice. She is the principal investigator of the REACHES Justice Health Lab, where her primary academic interests include research, advocacy, and policy development that reduces health disparities, addresses bias, racism, and other structural determinants of health and promotes social justice. Her current research involves evaluating disparities in research enrollment and participation, the use of medical legal partnerships to address the social determinants of health, understanding provider and public perceptions of brain death, and addressing social and structural determinants of health that contribute to critical illness.

Abby R. Rosenberg, M.D., M.S., M.A.

Chief of Pediatric Palliative Care

Abby R. Rosenberg, M.D., M.S., M.A., is the Chief of Pediatric Palliative Care at the Dana-Farber Cancer Institute, Director of Pediatric Palliative Care at Boston Children’s Hospital, and an Associate Professor of Pediatrics at Harvard Medical School. Her scholarship focuses on creating and implementing interventions to build resilience and improve quality of life among children with serious illness and their families. She has been continuously funded by the NIH for her entire career and currently holds multiple independent NIH grants to test and disseminate her novel resilience-coaching program. She has also been the director of a T32 focused on palliative care research methods and the mentor for 8 early career investigators supported by NIH K-awards. Dr. Rosenberg is the recipient of the 2021 Faculty Mentoring Award at the University of Washington, the 2022 American Cancer Society Trish Greene Lifetime Achievement Award for Quality of Life Research, and the 2023 American Cancer Society Pathfinder in Palliative Care Award.

Jennifer Siedman

Director of Family Engagement for Courageous Parents Network (C.P.N.)

Jennifer Siedman is the Director of Family Engagement for Courageous Parents Network (CPN), a non-profit whose mission is to orient and empower parents and others caring for children with serious medical conditions by providing resources and tools that reflect the experience and perspective of families and clinicians. She brings her experience as an educator and development professional to her role in engaging patient and caregiver organizations, industry partners and healthcare clinicians. A bereaved mom, she serves as president of Ben’s Dream: Sanfilippo Research Foundation and has worked with researchers and patient advocacy groups worldwide to fund and advance gene therapies to the clinical trial stage. In addition to co-authoring Supporting Families Considering Participation in a Clinical Trial, and NeuroJourney, she has been recognized with a Boston Celtics Heroes Among Us award, Global Genes RARE Champion of Hope, and Sanofi TORCH Award. Jennifer received her MEd in middle school education from Lesley University.

Mihaela S. Stefan, M.D., Ph.D.

Program Director

Mihaela S. Stefan, M.D., Ph.D. is a Program Director at NHLBI, Lung Division where she started in March 2022. She is Board-certified in Internal Medicine and Palliative Care.

Prior to this position she was an Associate Director for Implementation Science of the Institute for Healthcare Delivery and Population Science. and an Associate Professor of Medicine at University of Massachusetts Medical School-Baystate, the Director of the Perioperative Care Program, Director of Quality Assessment, Division of Healthcare Quality and Director of the Scholarly Activity in the Internal Medicine Residency Program at Baystate Medical Center.

She completed a Ph.D. in Clinical and Translational Science at Tufts University School of Graduate Biomedical Sciences, Boston, MA in 2015. In 2013, she received a four-year career development award from the National Heart, Lung Blood Institute of the NIH to study the effectiveness of noninvasive ventilation in patients hospitalized with acute respiratory failure, and in 2019, a 5-year NHLBI R01 to examine the effectiveness of interprofessional training to increase the uptake of noninvasive ventilation in patients with COPD. She had published more than 90 manuscripts and book chapters and her research interests span the domains of health services research, comparative effectiveness research, and randomized controlled trials with focus on 1) de-implementing low value care and increasing the use of evidence-based interventions 2) hospital-based strategies to improve the outcomes of patients with acute respiratory conditions with a special focus on COPD, asthma and acute respiratory failure; 3) the impact of frailty on outcomes and interventions to improve the outcomes of frail elderly patients.

Robert F. Tamburro, M.D., M.Sc.

Physician of Pediatric Critical Care, Hospice and Palliative Care Medicine

Robert F. Tamburro, M.D., M.Sc., is a board certified Pediatric Critical Care and Hospice and Palliative Care Medicine Physician who joined the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) as a medical officer in the Pediatric Trauma and Critical Illness Branch in June 2014. He remained in that position until 2021 when he transitioned to a new role serving as a Senior Adviser for Clinical Research in the Division of Extramural Research. In addition to his work at the NICHD, Dr. Tamburro still actively practices Pediatric Palliative Care Medicine.

Lori Wiener, Ph.D., DCSW, LCSW-C

Senior Associate Scientist, Pediatric Oncology Branch
Co-Director, Behavioral Health Core
Head, Psychosocial Support and Research Program
Social Worker

Lori Wiener, Ph.D., is an expert in psychosocial care for pediatric, adolescent, and young adult patients with critical illness. As a clinician and behavioral scientist, Dr. Wiener is interested in understanding the psychosocial experiences and needs of youth living with cancer or other serious illness. As co-director of the Behavioral Health Core and head of the Psychosocial Support and Research Program she has developed a robust clinical and research program that has focused on critical clinical issues such as parental coping, lone parenting, transnational parenting, sibling and sibling donor experiences, graph versus host disease, and end-of-life planning. This work has led to the creation of innovative resources such as books, workbooks, therapeutic games and an advance care planning guide for children, adolescents, and young adults. Each of these resources are distributed worldwide and widely utilized in pediatric centers.

Dr. Wiener proudly led the team that developed the first evidence-based psychosocial standards of care for children with cancer and their family members helped develop the Pediatric Psycho-Oncology Professionals website, which was created to foster international collaborations in clinical care, research, and education in this field.

Justin Yu, M.D., M.S.

Physician Researcher in Pediatrics, Internal-Medicine, and Hospice and Palliative Care Medicine

Justin Yu is a board-certified physician-researcher in Pediatrics, Internal-Medicine, and Hospice and Palliative Care Medicine. He works with the Supportive Care team at UPMC Children’s Hospital of Pittsburgh.
Yu’s research focuses on improving the health and well-being of children with medical complexity and their family caregivers through pediatric palliative care interventions. He is currently conducting several observational studies which examine the association between caregivers’ experiences of their child’s care coordination and caregiver’s health-related quality of life, national trends in self-reported mental and physical health among caregivers, and levels of emotional distress among caregivers. From the work of his observational studies, he plans to develop, refine, and trial a behavioral intervention aimed at improving caregiver emotional well-being by improving their coping.