Breast Cancer Consortium is a dynamic group of women and men from diverse backgrounds and affiliations who work across disciplines, constituencies, and nations to spur open and constructive dialogue about breast cancer and to encourage collaborative, evidence-based solutions to the social, cultural, and political problems underpinning breast cancer.

Read more about the founders here.

Board of Directors


Gayle Sulik, Medical Writer, DynaMed, (Founder and Principal Investigator)

Gayle Sulik PhD is a sought-after expert in breast cancer and women’s health. Her ground-breaking analysis of the culture of breast cancer, richly described in her book Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health, is an essential read that provides thorough grounding for thinking through the complexities of the pink ribbon system.

A social scientist and medical writer, she received the prestigious National Endowment for the Humanities research fellowship, was named one of the top online influencers in the field of breast cancer from ShareCare, and is winner of the Sociologists for Women in Society Distinguished Feminist Lecturer Award. She founded Breast Cancer Consortium in 2012 as an international working group committed to energizing public discourse about breast cancer, critical health literacy, and evidence based medicine.

Gayle Sulik has much to offer in showing others not only how to do the kind of important research she has done, but how to reach beyond the ivory tower to share it. She has reached more than 800 thousand readers on her Pink Ribbon Blues Blog alone; published in CNN, The Guardian, Scientific American, Pacific Standard, Broadly, Psychology Today, Oxford University Press, Ms Magazine, Feminist Reflections, Girl w/ Pen, and other outlets; is regularly quoted in a variety of media outlets from Reuters and USA Today to Marie Claire, Health News Review, BMJ, and The New York Times Magazine. Dr. Sulik has been a guest on NPR, Al Jazeera, America’s Radio News Network, Oprah Radio, “The Stupid Cancer Show,” Reach MD, and others. In her free time, she practices yoga.


Amber Deane, Research Coordinator, Institutional Review Board

Amber Deane PhD has experience working in a variety of professional settings, including universities and government agencies. She was an assistant professor in the Department of Behavioral Sciences at Albany State University specializing in the sociology of health and illness. She has provided programmatic input, management, and quality assurance for the Texas Office of the Attorney General and assisted in the oversight of statewide community health initiatives for the Office for the Elimination of Health Disparities. She has served on committees pertaining to program review and prioritization, accreditation, institutional review of research studies (IRB), and health disparities. She has developed new curriculum requirements and courses for medical sociology as well as online and hybrid courses. Amber is skilled in presenting complex material to diverse audiences and working collaboratively on multi-disciplinary teams.


Grazia De Michele, Researcher, Social Media Liaison, International Partner, Italy and UK

Grazia De Michele, PhD is an Italian-born researcher and historian currently living in the United Kingdom. Her doctoral thesis, “‘At the gates of civilization’: Southern children in Turin primary school from the 1950s-1970s,” analyzes the social construction of Southern migrants’ children during the post-war period. Grazia was diagnosed with breast cancer at age 30, during the final year of her doctoral work. She had no family history of the disease or genetic predisposition. As an historian she is skilled in analyzing dominant discourses. Following her experience with breast cancer, Grazia is particularly committed to unraveling those surrounding the disease. In May 2011 Grazia started the Italian blog Le Amazzoni Furiose (The Furious Amazons) to raise awareness among Italian women about the need to change the conversation on breast cancer and promote research into the systemic issues contributing to the epidemic. She also contributes regularly to the twitter hashtag #BCSM – breast cancer social media. Along with Cinzia Greco, she co-edited two special issues of the BCC Quarterly: Demystifying Breast Cancer, which highlights stories typically missing from the broader breast cancer narrative, and By Your Side: Being a Caregiver. Read Grazia’s Portrait »


cinzia Headshot_CanvasCinzia Greco, École des hautes études en sciences sociales (EHESS)/Centre de recherche médecine, sciences, santé, santé mentale, société, International Partner, Italy and France

Cinzia Greco PhD has degrees in Italian literature and Anthropology from the Universities of Salento and the University of Bologna in Italy, and in Gender studies from École des hautes études en sciences sociales in France. Cinzia’s interests focus on the interplay of body, gender and medicine. Her doctoral research, “Breast Reconstruction in Oncology and in Cosmetic Surgery: A Comparative Sociological Analysis,” was funded with a scholarship from the Cancéropôle Île-de-France. This comparative research, in France and Italy, explored the way patients and doctors view and manage post mastectomy breast reconstruction and cosmetic breast surgery. She is interested in learning how gender norms across these cultures influence breast cancer policies and treatments. She and Grazia De Michele co-edited two special issues of the BCC Quarterly: Demystifying Breast Cancer, which highlights compelling stories typically missing from the broader breast cancer narrative, and By Your Side: Being a Caregiver.


Ana Porroche-Escudero, Research Associate, Lancaster University, International Partner, Spain and UK

Ana P. Escudero received a BA in Social Work at The University of Zaragoza, Spain (2001), BA in Social Anthropology at Barcelona University (2003), MA in Women´s Studies at The University of York (2006)., and PhD in Anthroplogy from the University of Sussex. Her PhD dissertation, “Political Ethnographic Narratives of Breast Cancer in Spain,” investigated how Spanish women define health priorities when living with breast cancer. From an interdisciplinary perspective, her research focuses on narratives that are typically excluded from public discourse and provides insight into the structural factors that shape individual experiences of illness. Bridging academic and other communities transnationally, she has worked with science cafes – a forum for debating science issues and promoting public engagement. She is a research associate at the Division of Health Research at Lancaster University, working with colleagues from diverse backgrounds and affiliations to promote and deliver quality research on public health equity in the North West Coast of England.


Bonnie SpanierEmerita, University at Albany, SUNY (Chief Advisor)

Professor Spanier is an internationally recognized consultant on women’s studies and curriculum transformation, particularly in the natural sciences. She is an emerita professor in Women’s Studies at the University at Albany, State University of New York. Bonnie Spanier received her doctorate from Harvard University in Microbiology and Molecular Genetics. While teaching biology at Wheaton College in MA, she received grants from the (U.S.) National Institutes of Health and the American Lung Association. A grant from the Bunting Institute of Radcliffe College about Women in American Society catalyzed her move to develop pioneering feminist analyses of the sciences. Her book Im/Partial Science: Gender Ideology in Molecular Biology (Indiana University Press, 1995) has been praised for its significance to physicians, scientists, and feminists. Other publications analyze the errors of biological determinist claims about differences between groups. Her more recent scholarship combines her advocacy and education work as a co-founder of the Capital Region Action Against Breast Cancer (CRAAB!) with her scientific and feminist analysis of the science and politics of breast cancer activism. Bonnie Spanier is currently working on a second book, on evidence based medicine.


Julian Urquijo, Systeem Medical Information Systems (Technology)

Julian Urquijo (RHCE) specializes in the management and deployment of electronic health records and practice management systems. He assists clients in selecting and implementing management software, analyzes clinical practice workflows, and customizes software to meet the needs of medical practices. Julian has a broad range of technical expertise – including network design and systems administration, database design and reporting, hardware, and server operating systems. Prior to his work with Systeem Medical, he served as the Director of Technology for The Darrow School and for New York Special Olympics. He designed the technology infrastructure including communication systems and networks, Internet connectivity and security, hardware, and end-user applications. He is a proponent and supporter of open-source software and deploys his solutions on Linux when possible.

Contributors


Astrid Eich-Krohm, Research Associate, Otto-von-Guericke University, Germany (contributing board member, 2012-2015)

Astrid Eich-Krohm is a research associate in the Institute of General Medicine at Otto-von-Guericke University. She received her training as a registered nurse in Germany and then became a nursing educator. After moving to the US, she went back to school and received her BA, MA, and PhD in sociology from University at Albany (SUNY). Astrid’s research is informed by both careers. Her thesis focused on infertility and how couples make decisions about childlessness, and her dissertation investigated how German highly skilled families determine whether to stay permanently in the US or return to their home country. She served as an associate professor of sociology at Southern Connecticut State University for five years and had the opportunity to combine her medical and sociological interests in her courses on the sociology of aging, medical sociology, migration, and other subjects. Astrid returned to Germany and is currently investigating aging and chronic disease.


Annette Madlock Gatison, Associate Professor, Southern Connecticut State University (contributor, 2013-2014)

Annette Madlock Gatison is an associate professor in the Department of Communications at Southern Connecticut State University. She completed doctoral work in Intercultural Communication and Rhetoric at Howard University in Washington, DC in 2007. She is a former Howard University Preparing Future Faculty Fellow. While attending Bethel College (now University) in St. Paul, MN, she earned her MA in Communication Studies, BA in Organizational Studies, and a certificate in Post-Secondary Teaching. She is a former National Women’s Studies Association and Spelman College 2009 Leadership Institute fellow. She has presented over 20 papers at national and international conferences. She published “Body Politics- Strategies for Inclusiveness: A Case Study of the National Breast Cancer Coalition” in Contexts of the Darkside of Communication (Lang Publishing, 2015) and “Playing the Game Communicative Practices for Negotiating Politics and Preparing for Tenure” in the edited volume, Still Searching for Our Mother’s Garden (Niles and Gordon, 2011). She has also published in multiple encyclopedias. Her new book “Health Communication and Breast Cancer Among Black Women: Culture, Identity, Spirituality, and Strength” was published in 2016.


Alexandra (Ally) Gibson, Post-doctoral Research Fellow, University of New South Wales, Sydney Australia (contributor, 2015-2017)

Ally Gibson, BA(Hons) and MA in psychology at Rhodes University in South Africa and PhD in health psychology from The University of Queensland in Australia, does research in the sociology of health and illness, inter-professional relationships in health care, women’s health, experiences of cancer, and gender and sexuality. Her doctoral work examined the pink ribbon culture of breast cancer in terms of what space is made available to women from various minority groups in Australia. She considered the impact of breast cancer culture in Western society, and how women from these groups make sense of their illness. Ally’s PhD resulted in several published articles and two research reports. She is currently a post-doctoral research fellow at the University of New South Wales in Australia and one of the projects she is working on examines women’s experiences of social support while having cancer. Ally has been involved in many projects relating to cancer, women’s health, and aged care. Ally’s research is driven by her interest in people’s experiences of health and illness as well as a desire to highlight inequalities in health care.


Ilana (“Lani”) Horn, Associate Professor, Vanderbilt University (contributor, 2012-2015)

Ilana (“Lani”) Horn is associate professor of mathematics Education at Vanderbilt University’s Peabody College. Her scholarship focuses on everyday learning and developing theoretical frameworks that account for social and emotional as well as psychological dimensions of human cognition. When she became a breast cancer patient in 2009, two years after losing her stepbrother to cancer, she became interested in documenting and analyzing the social and emotional aspects of cancer, treatment, and survivorship. She wrote about issues such as caregiving, end of life, doctor-patient communications, the cultural expectations of patients, and young adults and parents with cancer on her blog, chemobabe, and other outlets.


Sarah Horton, Artist, Film-maker, Story Teller, and Funeral Celebrant (contributing board member, 2012-2015)

Sarah Horton is an artist, bookmaker, film-maker, gardener, story teller, and funeral celebrant living in Liverpool, UK. Since 1995 she has worked with her partner Ronnie Hughes as the creative enterprise ‘a sense of place‘, and all their work is about creating better places for people to live in and work in. Following her diagnosis with breast cancer in 2007, Sarah wrote a book about her experience, Being Sarah, which was published in 2010 (Wordscapes, £9.99, 272pp). Highly commended as well-written and intelligent by the British Medical Association Medical Book Awards, Being Sarah is opinionated, outspoken and life-affirming, but also questioning of the pink culture around breast cancer. Sarah Horton is an experienced media commentator, and has spoken widely about her personal experiences of breast cancer; choice and control; the politics of the disease; and environmental links and prevention. Sarah’s work was recognized by an invitation to Her Majesty’s Garden Party at Buckingham Palace in 2011. Sarah describes her experience with breast cancer as ‘life-changing’ and she has come to re-evaluate her life and her work. She trained to become an independent funeral celebrant who now works with families and friends to create personal funeral ceremonies that reflect the unique life and values of the person, with heart and soul.


Kathi Kolb, Writer, Artist, Women’s Health Activist, Physical Therapist (contributing board member, 2012-2016)

Kathi Kolb is a long-time writer, artist and activist for women’s healthcare. She has worked as a physical therapist for 20 years, currently in home healthcare. She was diagnosed with breast cancer in 2008. Her experience of the healthcare system as a cancer patient, and as a clinician, prompted her to start a blog called The Accidental Amazon. Kathi Kolb’s motivation to speak out and question the status quo comes from her belief that, “change does not happen in silence.” She writes with gusto, soul-searching, analytical prowess and a commitment to evidence.


KaviKoshy BWKavitha Koshy, Adjunct Professor (contributor, 2014-2015)

Kavitha Koshy PhD has extensive experience in participatory research, community organizing, and sociology. Before coming to the United States to complete her graduate work in 2005, Dr. Koshy worked with Kashtakari Sanghatana (Union of the Hardworking), an indigenous people’s organization focusing on women’s health collectives in Dahanu, India and Vimochana: Forum for Women’s Rights in Bangalore, India, an organization that developed community-level responses to violence against women. She received her Master’s of Social Work in Mumbai at the Tata Institute of Social Sciences and graduate degrees in Women’s Studies (MA) and Sociology (PhD) from Texas Woman’s University. Her graduate work concentrated on cross-cultural misunderstandings, transnational advocacy, development, and globalization. She also taught on-line and face-to-face courses on race and ethnicity, developing societies, social problems, ethics, and transnational feminist theories and practice. In 2010, Kavitha worked with Gayle Sulik on a background study of the differentiated role of community based organizations in health policy formation that focused specifically on the U.S. breast cancer movement.


Cathie Malhouitre, Art director, Founder of “Au sein de sa différence” [Within our differences], France (contributor, 2012-2014)

Cathie Malhouitre of Paris, France is a designer and artist who is committed to “the real” when it comes to breast cancer – realistic discourse, realistic expression, realistic portrayal, and realistic engagement. Cathie’s attention to realism is the culmination of her deep desire to find acceptance, peace, and fulfillment after having two breast cancer diagnoses and subsequent treatment. She started writing a blog, Rosarosir, where she could work through what she was facing, talk about cancer frankly, and avoid what she calls “pink-false-happiness.” She designed Souti1© –pronounced “soutien-gorge”– the first assymetrical bra for single-breasted women in France. When approached by French filmmaker Philippe Joubert to take part in the film short, A Simple Message, Cathie agreed. The film focuses on the difficulties that cut across varied life experiences (i.e., including breast cancer), the decision and effort needed to transcend challenging and sometimes tragic circumstances, and how a single step can make a monumental difference. Cathie’s character in the film exposes a reality of breast cancer that is uncompromising and without embellishment. After her second breast cancer diagnosis in 2011 she founded “Au sein de sa différence” which celebrates difference and takes a pedagogical approach to patient empowerment, activism, and awareness. Unwilling to accept the status quo of cancerland, Cathie argues that until there is a real cure winning the war on cancer is really about learning to live well with the disease. Cathie directed the ASDSD/BCC collaboration, Pink Questions. Read Cathie Malhouitre’s BCC portrait »


Angelo Merendino, Photographer and Cancer Advocate (contributor, 2013)

Angelo Merendino studied photography at Cuyahoga Community College in Cleveland in the early 2000’s, focusing on documentary photography that promotes awareness, thought, and communication. When his wife of 5 months was diagnosed with breast cancer in 2008, he found the most effective way to share their daily challenges was with his camera. Angelo’s pictures eventually came together as a photo-documentary called, “The Battle We Didn’t Choose: My Wife’s Fight With Breast Cancer.” He writes, “My photographs show this daily life. They humanize the face of cancer, on the face of my wife.” Ever present behind the camera Angelo documented the sadness, isolation, and love of a couple that would share a lifetime of experience in barely a few years. Jen died in December 2011 at age 40. Angelo’s photographs of Jen have been published on CNN’s Photo Blog, SocialDocumentary.net, and several media outlets. They have been on exhibit at cancer centers and galleries. He is the recipient of the 2012 Communication Arts Photography Annual, received an Honorable Mention from the The Art of Documentary/SDN (2012), and was a recipient of the 2011 People’s Choice – Artist’s Wanted award. Read Angelo Merendino’s BCC portrait »


Judith Nudelman, Clinical Associate Professor of Family Medicine, Brown University (contributor, 2013-2017)

Judith Nudelman MD is a clinical associate professor of family medicine at Brown University, where she has practiced clinical family medicine in a variety of settings and taught for over 25 years. She was diagnosed with breast cancer in 2008, and developed lymphedema after her initial surgery. Discovering that the condition is common yet rarely taught in pre- or postdoctoral medical education, Judith co-founded the website, Step Up, Speak Out, an evidence based site for patient education on lymphedema. She trained as a certified lymphedema therapist and sits on the board of the Lymphology Association of North America. In addition to publishing articles and textbook chapters on the subject, she wrote a primer on lymphedema for health care providers. She regularly lectures to medical students, attending physicians, residents and massage therapists on lymphedema and cancer survivorship. After developing an iatrogenic second primary cancer as a direct result of her breast cancer treatment, she continues to advocate for coordination of care in oncology and transparency in therapeutic decisions for oncology (and all other) patients.


Linda “Kristi” Rickman, Student Affairs, Florida SouthWestern State College (contributor, 2013-2015)

Following her mother’s first diagnosis with breast cancer in 1996, Kristi Rickman became a pink ribbon addict. Then a second diagnosis 5 years later led her to immerse herself further into pink ribbon culture. After 16 years of whole-hearted pink ribbon support, Kristi’s viewpoint began to shift in October 2011 after attending a session by Dr. Gayle Sulik on “Pink Ribbon Blues.” Since the pink ribbon had been so intertwined in her personal life, it was very challenging to hear about its negative consequences. As Kristi continued to look into the matter, she began to see what is going on behind the pink ribbon. Kristi has considerable experience in higher education in various areas of student affairs. She ‎is Associate Dean for Student Affairs & Director of Campus Life at Florida SouthWestern State College.


Linda Rubin, Professor, Texas Woman’s University, (contributor, 2012-2015)

Professor and licensed psychologist in the Counseling Psychology doctoral program at Texas Woman’s University, Linda Rubin’s clinical, teaching, and research interests focus on psychological trauma, relational violence, and the psychology of women. In previous scholarly publications, she discussed a shield of denial that human beings construct to provide psychological protection from thoughts and feelings that are too devastating to contemplate for prolonged periods of time. In her essay “Pink Ribbon Culture as a Form of Psychological Denial” she explains that while psychological self-protection is completely understandable at the individual and cultural levels, there are moments in time when it is important, even necessary, to examine individual and cultural expectations and messages, instead of denying them. Unfortunately, pink ribbon culture may be imposing joyfulness when terror is much closer to the reality.


Jody Schoger, Writer and Cancer Advocate (contributor, 2012-2016)

Jody Schoger had more than 25 years of experience in public relations and communications in health care, science, education and the arts. Following her diagnosis with a locally advanced breast cancer in 1998, she devoted her energy to helping other survivors. She authored the “Anchored Activism” column in Oncology Times and the respected WomenWithCancer blog, and was co-creator of Breast Cancer Social Media (#BCSM), a popular tweetchat for breast cancer survivors (found at www.bcsmcommunity.org). Her writing has been featured in Cure Magazine as well as Cure’s blog. She served as a grant reviewer for the Lance Armstrong Foundation, was a member of the Breast Health Collaborative of Texas, the National Breast Cancer Coalition, and served on the American Breast Surgeons Board of Advocates. Jody Schoger was selected for the 2013 Stanford Medicine X ePatient Scholars program. A frequent guest on SIRIUS radio’s “Doctor Radio,” she also has been quoted several times in USA Today and other publications. Jody learned of her breast cancer recurrence in April of 2013, following a 15-year remission. Our friend and colleague died on May 18, 2016 at age 61 from metastatic breast cancer.

Jennifer Tirrell, Reference Librarian (contributor, 2012-2016)

Jennifer Tirrell has been a school librarian for 13 years. She earned her Masters in Library and Information Science from the University of California, Los Angeles and her Bachelors degree in History from the University of Massachusetts, Amherst. She has experience teaching middle school History and English in Massachusetts and in California. She has also worked in the retail book business and in public libraries. She has served as co-editor of the BCC Quarterly, the BCCQ special issue, and other publications.


Marie-Laurence Waldelöf, Copywriter and Communications Manager, France (contributor, 2012)

Fluent in french, swedish, and british english, Marie-Laurence Waldelöf of Paris, France specialized in copywriting and communications. After her breast cancer diagnosis in 2009, she began exploring the cultures and contexts of breast cancer. Survivorship did not represent her reality, as a patient, a person, or a woman. Connecting with other diagnosed women in France and far beyond, she began observing and documenting the vagaries of “cancerland” from an outsiders perspective. Sharing observations, feelings and questions with other diagnosed women strengthened her convictions and commitment to challenging assumptions about breast Cancer culture, medical technology, research, and patient advocacy. “[Breast cancer] is a social challenge wherever you live, ” she said, “a global issue beyond nationalities and across borders.” Marie-Laurence wrote a 40-page synthesis and guidebook of Gayle Sulik’s book “Pink Ribbon Blues” in french, Le Blues du Ruban Rose. She also contributed to a BCC/ASDSD collaboration, Pink Questions. Marie-Laurence Waldelöf died of breast cancer on December 25, 2012.


Jessica Werder, Health Researcher, Community Outreach Manager (contributor, 2014-2015)

Jess Werder earned an M.P. H. from State University of New York (SUNY) at Albany, and is Community Outreach Manager for the Fairfax County Health Department in Virginia. With the Peace Corps in Nicaragua from 2008-2010, she was a Community Health Promoter whose responsibility was to design, implement and evaluate department-wide community health programs, then, on her return to the States, continued this work with the Association of Farmworker Opportunity Programs. She was a graduate fellow at the SUNY Center for Women in Government and a Lecturer in the Department of Women’s Studies at U Albany. She now lives in the Washington, DC area with her husband and two young children. Jess currently researches and wrote the “Recent Research” column for Capital Region Action Against Breast Cancer! (CRAAB!), a community-based non-profit created in 1997 by a diverse group of caregivers, health practitioners, educators, advocates and breast cancer survivor. BCC is pleased to republish some of these insightful analyses in our own research briefs.


Michael Woodland, Consultant, Woodland Associates (contributor, 2012-2015)

At Woodland Associates, Michael Woodland PhD specializes in program implementation in philanthropy and healthcare sectors, as well as evaluation of collaboration. Building collaboration literacy and impact measurement are main focuses of his work, using both quantitative and qualitative strategies. As Director of Grants Administration and Policy Implementation, he led the responsive grant program for the Blue Cross and Blue Shield of Florida Foundation for 7 years. He was responsible for crafting policy responses to the issue of the uninsured in the state of Florida, helping to create the first-ever statewide searchable Internet database of Florida safety net services, and conducting research on the uninsured and the safety net of services. Michael has testified before the Florida House of Representatives on these issues. In his role as grants manager for The Blue Foundation his portfolio included 160 grants from the only statewide health care foundation, working to strengthen Florida’s safety net through evidence-based practices, overseeing research into program effectiveness, and convening 200 safety net providers from across the state to compare and contrast best practices.


Edyta Zierkiewicz, Pedagogy Institute at Wrocław University, Poland (contributor, 2012-2017)

Edyta Zierkiewicz of Wrocław, Poland has a Ph.D. in Counseling Studies and her research focuses on women, aging, and breast cancer in Polish society. She has co-edited several books on feminism, elderly women and breast cancer, including Kobieta i (b)rak. Wizerunki raka piersi w kulturze (Woman and Cancer: Images of Breast Cancer in Culture, 2007). Her most recent book Rozmowy o raku piersi. Konstruowanie trzech poziomów znaczeń choroby (Conversations about Breast Cancer. Three Levels of Disease Constructing Meanings, 2010) is a first of its kind, including the perspectives of breast cancer survivors and their relatives, journalists of women’s magazines, and oncologists. Together with Krystyna Wechmann, President of Breast Cancer Survivors’ Federation, she is currently writing a book on the breast cancer movement in Poland. Gayle Sulik and Edyta Zierkiewicz collaborated on an article for the Journal of Gender and Power on the role of the feminism in U.S. and Polish breast cancer advocacy as well as two entries on “Pink Ribbon Campaigns” and “Breast Cancer Support Groups and Advocacy” in the Cultural Encyclopedia of the Breast, edited by Alta Mira Press.


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