The Great Women Behind Great Lupus Discoveries
March is #WomensHistoryMonth and we, at More Than Lupus thought we would take this opportunity to give a long overdue “thank you” to some of the amazing women in the medical community who have dedicated their professional careers to advancing lupus research, improving access to care, advocating for underrepresented communities, increasing community engagement, and fiercely fighting for a cure.
These dynamic women are positioned all over the US in hospitals, research facilities, colleges, nonprofit offices and more, and are often unknown to the patient community. Working behind the lupus curtain, they have made some of the greatest lupus discoveries and advances of the modern era.
You may not know their names, but you have in one way, or another been influenced by their work. Whether it is an improved diagnostic tool, a new treatment, or a buddy system that helps individuals feel more comfortable with enrolling in clinical trials, these ladies have poured their time, talents, and training into making it happen.
Unfortunately, we don't have the blog space to feature every incredible female that has contributed to these positive outcomes, but at least this is a start.
It is our pleasure to introduce you to these passionate women, and on behalf of the lupus community, say, 'THANK YOU" for advocating for us, seeing us, and helping make our world more hopeful.
Dr. Edith Williams: During Edith Williams doctoral experience, she became involved in the Buffalo Lupus Project, which was a community-based research investigation of minority communities of Buffalo, New York. This led to her facilitating the “Breakfast with a Buddy Biomarkers of Lupus Study” a study involving analysis of pre-clinical heart disease, inflammation, and traditional cardiovascular risk factors in a largely African American cohort of women with (SLE) from the Buffalo Lupus Project. With a doctorate in Epidemiology and Community Health, she joined the faculty of the University of South Carolina in
July of 2007, as a Research Assistant Professor with the Institute for Partnerships to Eliminate Health Disparities (IPEHD) at the Department of Epidemiology and Biostatistics in the Arnold School of Public Health. Dr. Williams was appointed as the Deputy Director and served as the Principal Investigator of a Pfizer fellowship in Health Disparities; the Balancing Lupus Experiences with Stress Strategies (BLESS) as well as a study which sought to address barriers by testing whether self-rated travel burden disproportionately impacted African American lupus patients’ ability to participate in clinical trials and regularly attend rheumatologic appointments. In 2012, Dr. Williams received a National Institute for Arthritis and Musculoskeletal Disorders (NIAMS)/NIH Mentored Research Scientist Career Development Award (K01) for a project titled, “An Intervention to Improve Quality of life for African American lupus patients (IQAN)”, which furthered BLESS work. Currently, Dr.
Williams is an Assistant Professor in the Department of Public Health Sciences at the Medical University of South Carolina (MUSC), with a dual appointment in the Division of Rheumatology, and is examining whether a new, culturally tailored peer mentoring intervention improves disease self-management, indicators of disease activity, and quality of life in African American women with SLE.
Dr. Jillian Rose: Jillian A. Rose, PhD, MPH, LCSW, is the Vice President for Community Engagement, Diversity and Research at Hospital for Special Surgery. Dr. Rose leads the implementation of innovative community programs to enhance health, access to care and self-efficacy of traditionally underserved communities, in collaboration with other health care organizations and government agencies. She participates in research and quality initiatives to identify and address health disparities to ensure the highest quality care for all patients, with a focus on people impacted by lupus. Dr. Rose provides ongoing leadership and support for the Hospital’s collection of gender identity, sexual orientation, race, ethnicity and preferred language data. In addition, Dr. Rose plays an integral role in the HSS Community Health Needs Assessment and Community Service Plan. Since August 2005, Dr. Rose has occupied a leadership position in managing Rheumatology programs at the hospital, with a focus on two national peer support and education programs for people with systemic lupus and their families.
Dr. Michelle Petri: Michelle Petri, M.D. is a Professor of Medicine at the Johns Hopkins University School of Medicine and is considered one of the most influential and distinguished lupus researchers of the modern era. She attended medical school at Harvard University and fulfilled her internal medicine residency at the Massachusetts General Hospital. In addition, she completed two fellowship programs at the University of California, San Francisco in allergy and immunology and rheumatology. Dr. Petri is the Director of
the Hopkins Lupus Cohort, a longitudinal study of morbidity and mortality in systemic lupus erythematosus, and Co-Director of the Hopkins Lupus Pregnancy Center. In addition to her research, she regularly speaks at the American College of Rheumatology annual summit to audiences of thousands of rheumatology professionals and is on the medical advisory panel for the Lupus Foundation of America.
Dr. Mary Crow: Dr. Mary K. Crow is Physician-in-Chief and Chair of the Department of Medicine at HSS. She is also the Director of the Autoimmunity and Inflammation Research Program and Co-Director of the Mary Kirkland Center for Lupus Research at HSS. Dr. Crow’s academic and research career has focused on unraveling the cellular and molecular mechanisms that underlie the systemic autoimmune diseases, with a particular focus on systemic lupus erythematosus and rheumatoid arthritis.
Dr. Jane Salmon: Dr. Jane Salmon is Co-Director of the Mary Kirkland Center for Lupus Research, Director of the SLE APS Center of Excellence, Director of the FOCIS Center of Excellence, and Director of the Lupus Registry and Repository. Dr. Salmon’s research has focused on elucidating mechanisms of tissue injury in lupus and other autoimmune diseases. Her basic and clinical studies have expanded our understanding of pregnancy loss and organ damage in SLE and the determinants of disease outcome in lupus patients with nephritis, pregnancy, and cardiovascular disease.
Dr. Michelle Kahlenberg: Dr. Kahlenberg is an associate professor of internal medicine in the rheumatology department of Michigan Medicine at the University of Michigan. Her areas of practice in rheumatology include systemic and cutaneous lupus, rheumatoid arthritis, vasculitis, psoriatic arthritis, and ankylosing spondylitis. Dr. Kahlenberg’s work focuses on mechanisms that drive skin inflammation in systemic lupus erythematosus (SLE) patients. The lab’s overall goal is to identify novel targets for more effective and less toxic drug therapy development.
In 2017 she was selected to deliver the Edmund L. Dubois, MD, Memorial Lectureship, awarded by the Rheumatology Research Foundation of the American College of Rheumatology for significant contributions to lupus research. Dr. Kahlenberg has made substantial contributions to the field of lupus-related skin diseases. She is the principal investigator on an ongoing study analyzing how specific chemicals in lupus skin contribute to skin inflammation. Dr. Kahlenberg is also running another study investigating how these chemicals regulate inflammation in response to ultraviolet (UV) light. These studies will ultimately shed light on the factors that lead to the development of systemic autoimmunity.
Dr. Betty Tsao: Dr. Betty Tsao received her Bachelor of Science degree from the National Taiwan University, the Master of Science degree from Southern Illinois University, and the Doctor of Philosophy degree from University of Pittsburgh. She did postdoctoral fellowships at Scripps Clinic & Research Foundation, Indiana University School of Medicine and UCLA. For three decades, Betty Tsao has been on a painstaking trail of lupus, tracking down the cause of the autoimmune disease that primarily affects women of childbearing age through gene mapping. As she states, “I’ve been studying lupus forever." She said the last decade has produced breakthroughs in lupus research thanks to the ability to conduct genome-wide association studies, enabling scientists to scan the human genome to find common markers that appear more frequently in people with a particular disease. In the last 10 years, research has gone at “lightning speed” in identifying more genetic risk factors, she said. Now, about 100 genes have been implicated as possible risk loci for lupus.
Dr. Betty Diamond: Dr. Diamond is an internationally recognized leader in the field of lupus. She graduated with a BA from Harvard University and an MD from Harvard Medical School. She performed a residency in internal medicine at Columbia Presbyterian Medical Center and received postdoctoral training in immunology at the Albert Einstein College of Medicine. Dr. Diamond is the director of the Feinstein’s Institute of Molecular Medicine and is investigating the role of nerve receptors (NMDA), which are found in nerve cells that help control memory function, and their effect on adult brain dysfunction and fetal brain development of individuals with lupus. Dr. Diamond’s work will look to understand how to improve the lives of those living with lupus and protect their children from developing the disease and NPSLE. “We have researched NPSLE for 20 years, and that research shows that antibodies may create a chronic inflammatory state in the brain of adults and cause permanent cognitive impairment in their children who are exposed to these antibodies in pregnancy,” said Dr. Diamond. “With the NIH’s support, we will study if common medications could protect against these negative effects of lupus.”
Susan Manzi: Dr. Susan Manzi is Chair of the Lupus Foundation of America Board of Directors and also serves as the Foundation’s Acting Medical Director. Dr. Manzi is chair of Allegheny Health Network Medicine Institute and director of its Lupus Center of Excellence. She is a Vice Chair and Professor at Temple University. She received her medical degree from the University of Pittsburgh School of Medicine and completed her medical internship and residency at Duke University Medical Center where she was appointed Assistant Chief Resident, after which she completed her fellowship in rheumatology at University of Pittsburgh Medical Center and received her master’s degree in public health from the University of Pittsburgh Graduate School of Public Health. Dr. Manzi is recognized nationally and internationally as a leader in lupus patient care and research, and a pioneer in scientific investigation of cardiovascular disease in patients with lupus. She has served on a number of study sections and currently is a member of the Clinical and Integrative Cardiovascular Sciences Study Section for the National Institutes of Health (NIH).
She is the Secretary/Treasurer of the Systemic Lupus International Cooperating Clinics
Committee, and a member of the Foundation’s Medical-Medical-Scientific Advisory Committee. She has participated in the design and implementation of many phase I, phase II and phase III clinical trials and her expertise in this area has led to her appointment to the FDA Arthritis Advisory Board and six data safety monitoring boards for NIH intramural and extramural programs.
Dr. Manzi has an extensive national and international patent portfolio with exclusive licensing of lupus biomarker technology to Cypress Biosciences, Inc., in San Diego, CA with the intent to commercialize the technology over the next several years. Dr. Manzi has been the recipient of millions of dollars in research funding from the NIH and other agencies. She has published more than 100 reports of research in lupus and related diseases.
Andrea J. O’Neill: Is the Executive Director of the Lupus Research Alliance responsible for managing a multi-faceted fundraising program, generating more than $25 million annually to support lupus research programs. In addition, Andrea oversees the communications and marketing initiatives to assure an integrative and collaborative philanthropy and communications group. Andrea brings substantial knowledge and experience gained from a highly productive 14-year history working with the lupus community to help shape and implement the strategic vision for the Lupus Research Alliance. Prior to this position, Andrea served as the Director of Development and Operations for the S.L.E. Lupus Foundation and the Lupus Research Institute. In addition to leading the fundraising initiatives, she oversaw the pre-merger process involved in uniting these two organizations with the Alliance for Lupus Research. Before joining
the lupus community, she was Vice President for Development and Institutional Advancement at The HealthCare Chaplaincy for five years. Andrea holds a BS degree from Syracuse University and a certificate in fundraising from Columbia University.
Thank you to these incredible ladies, and the more who have helped the lupus community. Happy #WomensHistoryMonth.
In this together,