Mary Lou Ballweg, President and Executive Director of the Endometriosis Association and founder of Endometriosis Awareness Month in March discusses the endometriosis diagnosis journey, the mission behind the Alliance for Endometriosis. and the importance of encouraging open and productive conversations about endometriosis
Mary Lou Ballweg is President and Executive Director of the Endometriosis Association, an organization she co-founded in 1980 after being bedridden with endometriosis and related illnesses. The non-profit organization provides support and information for families affected by endometriosis, educates the public and medical community about the disease, and promotes and conducts research. The Endometriosis Association was the first organization in the world to address the support and education needs of women with endometriosis (endo) and to carry out ongoing research. It maintains its international headquarters in Milwaukee, Wisconsin, U.S.A. The Association has affiliates, members, Advisors, and funded scientific projects worldwide. Ms. Ballweg is credited with being the person most singly responsible for calling attention to endometriosis. Besides founding and leading the Association for 39 years, she has overseen publication of four books (Overcoming Endometriosis in its 10th printing; The Endometriosis Sourcebook, in its 7th printing; Endometriosis: The Complete Reference for Taking Charge of Your Health in its 5th printing and on Kindle; and the Spanish language version of The Endometriosis Sourcebook, entitled Endometriosis: El Libro de Consulta); production of three educational videotapes, an extensive body of literature on the disease (in fact, the first lay literature available), development and execution of two million-dollar-plus educational awareness campaigns, four public service announcement campaigns and numerous articles and chapters in journals, magazines, newsletters and medical textbooks. She is also editor of the Association’s popular newsletter. She has coordinated the Association’s international activities, including development of affiliates worldwide and literature in 31 languages. Together with Karen Lamb, Ph.D., she established the first research registry in the world on endo in 1980; the Association’s updated registry is maintained at the NIH where Ballweg collaborates on studies and established a joint fellowship. Utilizing the research registries and her contact with thousands of women with endo, Ballweg led the field in understanding the importance of pain in endo; endo as an immune disease and its relationship to autoimmune diseases, as well as certain cancers; synergistic and holistic treatments, particularly immune-based treatments; and endo as an environmental disease (with potential for prevention). She has raised millions of dollars for the endo movement. In 1992 she discovered a major link in the cause of endometriosis (hormonally and immune-active chemicals, including dioxin), research that has now been replicated many times, prompted numerous additional research studies, and received attention in leading scientific journals. Building on this work, a dedicated research program was established at Dartmouth Medical School in 1994. In 1998Vanderbilt University School of Medicine entered into a long-term partnership with the Endometriosis Association and committed to creating a research facility dedicated to finding the cause, new treatments, and a cure for endometriosis. In 1997, Ms. Ballweg championed research which led to development of a biotech company. Ms. Ballweg’s honors include being a founding Advisor to the Journal of Endometriosis, an extramural advisor on development of the NIH Reproductive Sciences Branch strategic plan, an ad hoc reviewer for Fertility & Sterility, as well as sitting on the evaluation panel of the NIH Specialized Cooperative Centers Program in Reproduction Research. She has won numerous awards for her work.