In the last several years Breast Cancer Consortium founder Gayle Sulik has fully engaged in public sociology to spur open and constructive dialogue about what is working and what is not working in the increasingly commercialized world of breast cancer. During this time and throughout her academic career she has had the privilege of working with individuals from diverse backgrounds and affiliations who are committed to revamping a system that no longer serves. She has brought together a dynamic group of women and men to encourage collaborative, evidence-based solutions. We work across disciplines, constituencies, and nations to change the breast cancer paradigm.
In addition to the brief biographies you’ll find below, we are in the process of writing more detailed portraits of our members to give you a better sense of who we are as people, and why we do what we do.
Gayle Sulik, Research Associate, University at Albany SUNY (Founder and Principal Investigator)
Gayle Sulik MA, PhD is a social science researcher affiliated with the University at Albany (SUNY) Department of Women’s Studies. With expertise in medical sociology and interdisciplinary community research, her scholarship has focused on medical consumerism, technology, cancer survivorship, health policy, and specifically the culture and industry of breast cancer. She is author of Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health (Oxford, 2011) as well numerous articles, essays, and book chapters on health and medicine. After serving as an assistant professor for six years, Dr. Sulik shifted her focus toward more public engagement. She received a highly competitive research fellowship from the National Endowment for the Humanities in 2008 and is the 2013 Sociologists for Women in Society Distinguished Feminist Lecturerer. Dr. Sulik’s popular Pink Ribbon Blues Blog has had more than 550 thousand readers and many of her articles have been reprinted or translated for other outlets. She also writes for Psychology Today. Gayle Sulik is currently one of the most sought after discussants on breast cancer and women’s health in the United States.
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 for these companies 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, whenever possible.
Bonnie Spanier, Emerita, University at Albany, SUNY (Chief Advisor)
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 on the influence of sexist beliefs on the content of biology, 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. Professor Spanier is also 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.
Jennifer Tirrell has been a school librarian for 10 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, which is where she first met Gayle Sulik. 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. Jenn is looking forward to working with BCC to develop a special collection resource library. She also serves as co-editor of the BCC Quarterly e-newsletter and other publications.
Amber Deane, Assistant Professor, Albany State University
Amber E. Deane PhD, is an Assistant Professor in the Department of Behavioral Sciences with a specialization in medical sociology at Albany State University, in Albany, Georgia. She is interested in the social construction of health and illness. More specifically, her research includes a gender analysis of medicalization and specifically examines how menstruation is socially constructed as a medical condition through Direct-to-consumer-advertisements by pharmaceutical companies. Dr. Deane is dedicated to moving beyond the identification of health disparities to providing solutions to address these inequities. Dr. Deane is committed to community collaboration and interdisciplinary scholarship. Other research interests include the impact of crime victimization on long term health outcomes. Amber directed a special BCC classroom project called Image Capture, to explore the extent to which the pink ribbon symbol is visible in everyday life, in the products and services students see on a regular basis.
Grazia De Michele, Researcher (International Partnerships – Italy and U.K.)
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. Grazia De Michele finished her PhD in August 2012. Grazia De Michele and Cinzia Greco are co-editing a special issue of the BCC newsletter, Demystifying Breast Cancer, which highlights compelling stories typically missing from the broader breast cancer narrative. Read Grazia De Michele’s Portrait »
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 her move to the United States 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 United States 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. Since collaborating with Gayle Sulik on a variety of projects, Astrid has shifted her interests toward breast cancer in Germany particularly in terms of its newly emerging status as a “chronic disease.”
Annette Madlock Gatison, Associate Professor, Southern Connecticut State University
Dr. 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; her dissertation is entitled, “A Kwanzaa Idea as Religious Space: A Rhetoric of Resistance.” She is also a former Howard University Preparing Future Faculty Fellow. While attending Bethel College (now University) in St. Paul, MN, she earned a Master’s degree in Communication Studies, a Bachelor’s degree in Organizational Studies, and a certificate in Post-Secondary Teaching. Dr. Madlock Gatison 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 professional conferences. She has recently published multiple entries in the Multimedia Encyclopedia of Women in Today’s World edited by Strange and Oyster, 2012; an entry on Self-Esteem in The Encyclopedia of Identity edited by Ronald L. Jackson, II; a chapter, “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). Dr. Madlock Gatison’s current research, The Pink and The Black Project® focuses on the negotiation of identity and the spiral of silence as it relates to women’s health and the communicative practices of breast cancer survivors and their family and friends.
Cinzia Greco, PhD candidate, École des hautes études en sciences sociales (EHESS)/Centre de recherche médecine, sciences, santé, santé mentale, société. (International Partnerships – Italy and France)
Cinzia Greco 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. She is currently conducting her doctoral research, “Breast Reconstruction in Oncology and in Cosmetic Surgery: A Comparative Sociological Analysis,” with a scholarship from the Cancéropôle Île-de-France. This comparative research, in France and Italy, explores the way patients and doctors view and manage post mastectomy breast reconstruction and cosmetic breast surgery. In particular, she is interested in learning how gender norms across these cultures influence breast cancer policies and treatments. Cinzia Greco and Grazia De Michele are co-editing a special issue of the BCC newsletter, Demystifying Breast Cancer, which highlights compelling stories typically missing from the broader breast cancer narrative.
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 »
Ana 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 that lends itself well to exploring the multi-dimensional aspects of illness experience, her research focuses on narratives that are typically excluded from public discourse and provides insight into the structural factors that shape individual illness experiences for Spanish women. Bridging academic and other communities transnationally, Ana has particular interest in working with science cafes – a forum for debating science issues and promoting public engagement. These cafes are growing internationally and provide an interesting outlet for scientists and writers to discuss their work with a broader range of audiences. Ana organized a public event in Spain on ‘Breast Cancer and Dissident Corporealities, a first of its kind, seeking to challenge heteronormativity and biomedical authority in breast cancer policy discourses and practices.
Fluent in french, swedish, and british english, Marie-Laurence Waldelöf of Paris, France specializes 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. A member of the organization “Au sein de sa différence” [Within our differences], Marie-Laurence argues that, “It’s a social challenge wherever you live, a global issue beyond nationalities and across borders.” Sharing that message, she wrote a 40-page synthesis and guidebook of “Pink Ribbon Blues” in french, Le Blues du Ruban Rose. We are saddened that Marie-Laurence Waldelöf died of breast cancer on December 25, 2012. Marie-Laurence contributed to the BCC/ASDSD collaboration, Pink Questions.
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 two entries in the new Cultural Encyclopedia of the Breast, edited by Alta Mira Press, “Pink Ribbon Campaigns” and “Breast Cancer Support Groups and Advocacy.” See Writing Projects »
Ilana (“Lani”) Horn, Associate Professor, Vanderbilt University
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.com. She hopes to merge her scholarship and advocacy through studies of cancer patients’ learning in the future.
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 important work was also 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. Sarah 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.
Abbey received her Bachelor of Science degree in consumer economics and marketing from Cornell University and completed an academic internship studying urban planning in New York City. Specializing in external and employee communications, media relations, and crisis and reputation management, Abbey has directed integrated communications and social media strategies for companies including TIAA-CREF, Bear Stearns, Winston & Strawn, LLP, and Estee Lauder. Abbey is committed to the development of “best practices” for customer engagement that address the needs of an increasingly diverse audience as the integration of traditional and new media platforms continue to evolve. In 2008, Abbey launched ABH Consulting to provide short-term marketing and communications solutions to businesses that downsized their staffs in the wake of the economic crisis. In the aftermath of her own diagnosis in 2009, Abbey developed an interest in the growing disparity between pink ribbon culture and meaningful action and expressed particular concern about the disconnect surrounding the ‘awareness’ message. Abbey believes these dynamics have commercialized breast cancer to the point of passivity, or ‘slacktivism’ – whereby consumers have become complacent and believe they have done their share by purchasing pink products. In reality, many of the companies that have jumped on the pink bandwagon have dubious connections to breast cancer and/or are less than transparent about their product’s proceeds and contribute only pennies on the dollar to the cause.
At Woodland Associates, Michael Hutton-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 consulting work, using both quantitative and qualitative strategies. As Director of Grants Administration and Policy Implementation, Michael 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 (www.floridashealth.com), 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.
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.
Angelo Merendino studied photography at Cuyahoga Community College in Cleveland, Ohio in the early 2000’s, focusing on documentary photography and building a foundation based on simplicity and a desire to compose images that promote awareness, thought, and communication. When his wife of 5 months was diagnosed with breast cancer in 2008, he found the most effective way to communicate and share their daily challenges was with his camera. He chronicled Jen’s ongoing treatments, side effects, emotional distress, compromised function, and the difficulties and uplifts of everyday living. Angelo’s pictures eventually came together as a photo-documentary called, The Battle We Didn’t Choose: My Wife’s Fight With Breast Cancer. “My photographs show this daily life. They humanize the face of cancer, on the face of my wife.” Ever present behind the camera Angelo also 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
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.
Kristi Rickman has 10 years experience in higher education in various areas of student affairs. Following her mother’s first diagnosis with breast cancer in 1996 Kristi 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. Committed to educating others about how to identify real awareness and make informed decisions about Cause support, Kristi plans to contribute to the Breast Cancer Consortium’s College Campus Outreach initiative.
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 both 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 has more than 25 years of experience in public relations and communications in health care, science, education and the arts. Following her own diagnosis with a locally advanced breast cancer in l998, she has since devoted her energy to helping other survivors. She is the author of the “Anchored Activism” column in Oncology Times, the respected WomenWithCancer blog, and the creator of Breast Cancer Social Media (#BCSM), a popular tweetchat for breast cancer survivors, also found at www.bcsmcommunity.org. Her writing has been featured in Cure Magazine as well as Cure’s blog. She has served as a grant reviewer for the Lance Armstrong Foundation, is a member of the Breast Health Collaborative of Texas, the National Breast Cancer Coalition, and serves on the American Breast Surgeons Board of Advocates. She recently spoke on survivorship on a #Med2 panel at Standord and will do so again at Life Beyond Cancer Center’s survivorship retreat and the fifth annual Digital Pharma East conference in Philadelphia. 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.