Meet The Team

Eszter Hars, Ph.D.
Founder and CEO, Shwachman-Diamond Syndrome Alliance

Dr. Hars holds a Ph.D. in Molecular Biology from the University of Medicine and Dentistry of New Jersey, where she studied cancer and leukemia.  She has over 20 years of experience in scientific research and the biotech industry.  As VP of Regulatory Affairs at CytoVera Inc., a lab equipment developer for hematopoeitic stem cell banking, Dr. Hars was in charge of regulatory approval of medical devices by the U.S. Food and Drug Administration.  Dr. Hars has also managed business development as well as customer relationships at Quosa Inc., an information technology company, which was acquired in 2012 by Elsevier, the largest scientific publisher in the world.  Currently, Dr. Hars is President of a biotech startup that specializes in developing new tools for various new therapies, including CAR-T cell cancer therapy and beta cell replacement therapy for diabetes.

 

Dr. Hars has been engaged in SDS community building and volunteering wherever possible, since her daughter was diagnosed with Shwachman-Diamond Syndrome (SDS) in 2015. In 2020, Dr. Hars founded the SDS Alliance, a 501(c)(3) nonprofit organization.  Through the SDS Alliance, Dr. Hars is dedicated to accelerating the development of new therapies for SDS.

Medical and Scientific Advisory Board

Professor Alan Warren
Professor of Haematology, Cambridge University Hospitals, UK
NHS Foundation Trust

Professor Warren obtained his undergraduate degrees in Biochemistry (1983) and Medicine (1986) at the University of Glasgow. He completed his PhD in Molecular Biology in 1995 in the laboratory of Dr. Terry Rabbitts at the MRC Laboratory of Molecular Biology where he discovered that the LIM-only protein Lmo2 is required for haematopoiesis. He is currently Professor of Haematology at the University of Cambridge, UK, Clinical Lead for Bone Marrow Failure and Myelodysplastic Syndromes at Cambridge University Hospitals, and elected Fellow of the Academy of Medical Sciences in 2005.

His lab is focused on ribosome biology and the clinical impact of its defects. Ribosomes are the universally conserved macromolecular machines that decode the mRNA to make proteins. Defects in the ribosome assembly process cause the 'ribosomopathies', a fascinating new group of human developmental disorders that perturb hamatopoietic stem cell function and promote progression to bone marrow failure, myelodysplastic syndrome and  acute leukaemia. Professor Warren's lab discovered that defective assembly of ribosomes, the machines in all our cells that make protein, causes Shwachman-Diamond syndrome.

Professor Marc Raaijmakers
Professor of Hematology, Erasmus MC Cancer Institute, the Netherlands

Prof. Dr. Marc H.G.P. Raaijmakers, MD, Ph.D. is a professor of Hematology in the Department of Hematology at the Erasmus MC Cancer Institute, Rotterdam, the Netherlands. He received his MD from the University Utrecht and completed training in Internal Medicine and Hematology at the Radboud University Hospital in Nijmegen, the Netherlands.

He completed postdoctoral research at the Department of Stem Cell and Regenerative Biology at Harvard University and the Harvard Stem Cell Institute, revealing a concept of niche-induced oncogenesis in the hematopoietic system. He (co)-authored papers in leading journals including Nature, Cell, Cell Stem Cell, J. Exp. Med, Blood and Leukemia, served in the editorial boards and provided numerous invited lectures at international meetings, including the European and national societies of Hematology (U.S.A., France, Germany, Spain and Japan) as well as multiple sessions of the International Shwachman-Diamond Syndrome Congress.

He chairs the expertise center on Leukemia Predisposition Syndromes at the Erasmus MC Canncer institute and the EHA scientific working group on Rare Hematological Blood Cancers. His laboratory studies micro-environmental contributions to the pathogenesis of hematopoietic disease with an emphasis on the initiation and evolution of preleukemic disorders. He published several articles on Shwachman-Diamond Syndrome and lead the efforts for the development of several SDS research models.
His clinical focus is in bone marrow failure syndromes and acute myeloid leukemia.

Dr. Johnson Liu
Hematologist at the MaineHealth Cancer Care, Maine Medical Center, Portland, ME, USA

Dr. Liu joined Maine Medical Center and MaineHealth Cancer Care in Portland in 2019, Maine, after serving as an attending physician at Monter Cancer Center, Long Island Jewish Medical Center, New York, for many years. He taught at the Zucker School of Medicine at Hofstra/Northwell, leading the hematology curriculum. He earned his MD degree from the University of Michigan Medical School and completed his residency at the Medical University of South Carolina and the National Institutes of Health. Dr. Liu was also a medical and hematology fellow and investigator at the National Institutes of Health, Bethesda, Maryland. His clinical interests include general hematology (anemia, thrombocytopenia, disorders of coagulation), bone marrow failure syndromes, myelodysplastic syndromes, acute and chronic leukemia, and multiple myeloma.

 

He has played an instrumental role in the 2011 International SDS Congress and publishing the consensus guidelines for the diagnosis and treatment of Shwachman-Diamond Syndrome (see here), and has been caring for multiple adult SDS patients while practicing in NY.

Dr. Coleman Lindsley
Assistant Professor, Medicine, Harvard Medical School
and Medical Oncology, Dana-Farber Cancer Institute, Boston, MA, USA

Dr. Coleman Lindsley, M.D., PhD. is a physician scientist at Dana-Farber Cancer Institute, specializing in research topics associated with MDS. His career has developed in conjunction with his interest in how disease evolves, and in turn, how new and existing therapies can interrupt the process of disease progression. The clinical research focus he has chosen in addressing problems with MDS has led to work in two important areas; examining how the fundamental properties of MDS change over time, and the features of MDS that cause resistance to therapy. Dr. Lindsley’s efforts include longitudinal studies of individual MDS patients over time to track how their disease progresses, as well as large studies aimed at identifying shared genetic characteristics that may indicate patients’ responsiveness or resistance to therapies offered.

 

The primary focus of the Lindsley laboratory is the biology and treatment of myeloid malignancies. We have used detailed genetic analysis of large cohorts of patients with myelodysplastic syndrome (MDS) and acute myeloid leukemia (AML) to define genetic pathways of disease ontogeny and to identify mutations that predict overall survival after chemotherapy and stem cell transplantation. We use mouse and cell line models to dissect the mechanistic basis of genetic cooperation during myeloid disease progression, with a specific focus on mutations that cause epigenetic alterations.

We are welcoming all adult SDS patients to participate and join this group on a rolling basis. Contact us at connect@SDSAlliance.org if you would like to join or have any questions.

Jacquelyn Kaufmann Poarch
Chair of the Adult SDS Patient Council, SDS Alliance

Jacquelyn Poarch is an adult with SDS, who was diagnosed by Dr Harry Schwachman in 1976. She has been active in patient advocacy for over 25 years.

 

Ms Poarch is a multi-subject certified teacher, who concentrates on science education, primarily secondary and tertiary school Biology, and Anatomy and Physiology, and Medical Terminology. She has had an eclectic career path, including as an opera singer in Europe, flying airplanes, and working in commercial aviation, as a social worker for the US Navy, and for the last 25 years, as a teacher.  During the Balkan War, she formed a 501c3, and went to Bosnia, and removed 98 teens, placed them with American families, and in high  schools so they could survive, and be educated. Ms Poarch has attended, and holds degrees and licenses from such diverse institutions as Universität Mozarteum, Salzburg, Austria, Manhattan School of Music (US), Columbia University (US), Stony Brook University (US), and Cambridge University (UK).

 

She is a licensed phlebotomist, and a HIPAA educator, and speaks twelve languages. She is the mother of a daughter with an unrelated rare disease.

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Shwachman-Diamond Syndrome Alliance

To advance treatments and finding a cure for Shwachman-Diamond Syndrome.

Contact us:

Email: connect@SDSAlliance.org

Phone: +1-617-329-1838

Mail: PO Box 2441
          Woburn, MA 01888

Shwachman-Diamond Syndrome Alliance is a US based not-for-profit 501(3)c corporation, serving the global SDS community.

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