Dr. Shimamura founded and directs the SDS Registry. She is Professor of Pediatrics at Harvard Medical School and Director of the Bone Marrow Failure and MDS Program of the Dana Farber/Boston Children's Cancer and Blood Disorders Center.  Dr. Shimamura provides clinical care and consultation for patients with SDS and other bone marrow failure conditions, and cares for patients with genetic predisposition to MDS/leukemia.  She conducts clinical and laboratory research to improve diagnosis and treatment for these conditions.

Dr. Myers co-directs the SDS registry. She is an Associate Professor of Pediatrics at the University of Cincinnati and Cincinnati Children's Hospital Medical Center and Director of the Hematopoetic Stem Cell Transplant Late effects and Survivorship Program. Dr. Myers focuses her research and clinical efforts on SDS and other bone marrow failure disorders, and late effects of bone marrow transplant.

Sara has been a Bone Marrow Transplant nurse for over 25 years and has been with the SDS Registry at CCHMC since 2012. Sara loves continuing to learn about SDS and helping the patients and families affected by this condition.

Dr. Reilly is an adult hematologist/oncologist at the Dana-Farber Cancer Institute with expertise in inherited blood disorders and leukemia predisposition. Through a close collaboration with pediatric colleagues, we have established a clinical infrastructure to facilitate a seamless transition from pediatric to adult care for our patients. The care of SDS patients is complex, and Dr. Reilly works closely with other subspeciality physicians to provide comprehensive care for patients. In the lab, he is focused on understanding how inherited gene variants influence the development of bone marrow failure and risk of leukemia.

Dr. Koo is a pediatric bone marrow transplant specialist at Cincinnati Children's Hospital Medical Center. She joined the SDS Registry team in 2022. Dr. Koo concentrates her clinical care and research efforts on patients with SDS and other bone marrow failure disorders in addition to acute and late complications following bone marrow transplant.

Dr. Reed is a clinical fellow in pediatric hematology/oncology at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center and has a background in cancer epidemiology. She began working with Dr. Shimamura and the SDS Registry team in 2022. Her research is focused on the clinical outcomes and cancer risk among patients with inherited bone marrow failure syndromes, including SDS.

Karyn is a nurse practitioner with 30 years of experience caring for people with blood disorders. She first worked with Dr. Shimamura in Seattle, and was excited to join Dr. Shimamura and the Bone Marrow Failure Program at Boston Children’s Hospital in 2016. Karyn is passionate about educating nurses about bone marrow failure conditions. She enjoys connecting with patients and families, and providing education and support to promote health and participation in healthcare decisions.

Leah is a Clinical Research Manager with the Clinical Research Operations Center at Boston Children’s Hospital. Starting in 2017, she began working with Dr. Shimamura coordinating the SDS Registry and since then has also become involved in other bone marrow failure registries and interventional trials as well. Leah very much enjoys working with both the SDS Registry patients and the research team.

Richard graduated from University of Kentucky with a Bachelors in Public Health and enjoys interacting with families when they come in for follow-up.

Lois graduated from Wesleyan University having received BA degrees in both Psychology and Neuroscience & Behavior. She is passionate about and interested in pursuing a career in medicine and research. She has experience working in hematology and oncology research in adults and is excited to work with children. As a clinical research assistant she works with both the Bone Marrow Failure and Shwachman-Diamond Syndrome teams on research projects and initiatives. In her spare time, she loves to read, play basketball, and spend time with friends.

Diana is a recent graduate of Wesleyan University where she received a BA in Neuroscience & Behavior and Psychology and participated as a student athlete on the field hockey team. She works as a Clinical Research Assistant on the bone marrow failure team where she facilitates patient communication with the SDS Registry and other ongoing studies. Diana is passionate about engaging in cutting-edge medical research, working alongside medical experts in the field, and striving to improve the overall well-being of individuals and families impacted by bone marrow failure.

Ali has worked in bone marrow transplant from an inpatient and outpatient bedside nurse to Ali's current role as a care manager. Ali enjoys learning about SDS and assisting patients and families in learning more about SDS.

Erica has been an outpatient nurse Care Manager at Cincinnati Children’s working with Bone Marrow Failure syndromes since 2011. Erica has been with the SDS Registry since 2012, and enjoys caring for patients and families, and appreciates the resource that the SDS Registry continues to be.

Dr. Andresen joined the laboratory of Dr. Shimamura as a postdoctoral fellow in 2022. Before that, she worked as a pediatrician in the Department of Pediatric Hematology and Oncology at the University Medical Center Freiburg, Germany. During this time, Dr. Andresen's work centered around leukemia predisposition syndromes and pediatric myelodysplastic syndromes. Currently, her research is focused on deciphering the role of clonal hematopoiesis in inherited bone marrow failure syndromes.

Chad received his BS then MS in Biology/Genetics and Molecular Biology respectively from Ball State University. He is currently the chair of the Laboratory Safety Group (LSG) of the hospital, and is a member of the Institutional Biosafety Committee as well as the Gene and cell therapy scientific review committee.

Elizabeth is a graduate of Brandeis University with a BS in Biology and Public Health as well as being a member of the university’s track and field team. She is currently a Clinical Research Assistant where she supports research efforts, facilitates patient interactions, and contributes to the SDS Registry and other related studies. Elizabeth is committed to enhancing patient care, increasing access to medical care for rare diseases, and making meaningful contributions to scientific research.