The ABOUT Network is governed by our patient-led Steering Committee which makes recommendations to the Executive Committee. Patient representatives on ABOUT’s Steering Committee first complete FORCE Research Advocate Training and apply to serve on a Work Group. Patient representatives to ABOUT participate in monthly meetings, review and provide feedback on ABOUT communications and research materials and act as ambassadors for the ABOUT network.
Anyone wishing to participate as a patient representative in the ABOUT Network should start by applying for the FORCE Research Advocate Training (FRAT) program. FRAT is a basic educational course aimed at preparing people to become engaged in research advocacy on behalf of the hereditary breast and ovarian cancer community. The program consists of a series of expert-led webinars and live meetings on topics including basic cancer, breast and ovarian cancer, genetics, statistics, clinical trials and research, patient protection, ethics, and government regulatory processes.
ABOUT’s Steering Committee is composed of our stakeholders representing HBOC patients, researchers, health care providers, and advocacy organizations. The Steering Committee includes a patient majority.
Rebecca Sutphen, MD
Co-Principal Investigator
Professor of Genetics
Morsani College of Medicine
University of South Florida
Rebecca Sutphen, MD is a board-certified Clinical Geneticist and Molecular Geneticist. For over a decade, Dr. Sutphen’s research has focused on identification and management of hereditary cancer risk, strategies for early detection and prevention, and ways to involve consumers in the entire research process. Dr. Sutphen serves as Co-Principal Investigator, leading the ABOUT Network, which focuses on hereditary cancer. She serves on the Board of Directors and Scientific Advisory Board for FORCE. Dr. Sutphen is a survivor of premenopausal breast cancer and melanoma. She is co-author of the book Confronting Hereditary Breast and Ovarian Cancer, which was published by Johns Hopkins Press February 2012.
Sue Friedman, DVM
Co-Principal Investigator
Executive Director
Facing Our Risk of Cancer Empowered
Sue Friedman is Founder and Executive Director of FORCE. A veterinarian by training, Sue founded FORCE in 1999 after her diagnosis at age 33 with breast cancer caused by a BRCA2 mutation. Sue founded FORCE to fill the information void for individuals and families with hereditary cancer, and to help them advocate for themselves.
In 2004, Sue left her veterinary career and relocated to Tampa to work more closely with researchers at the University of South Florida in order to increase stakeholder input into cancer research and improve health outcomes for people affected by hereditary cancers.
Sue is co-author of the book Confronting Hereditary Breast and Ovarian Cancer, which was published by Johns Hopkins Press February 2012.
Beth Ann Clark
Clinical Research Associate for Rebecca Sutphen, MD
Health Informatics Institute, Morsani College of Medicine
University of South Florida
Ms. Clark has been with ABOUT since June of 2013 and was involved in the development and submission of the original PCORI application for Phase I funding to build ABOUT into a Patient-Powered Research Network (PPRN). She is a Clinical Research Associate at USF and serves as the Project Manager for the ABOUT PPRN; she has a BA in Health Communications with a minor in Public Health, a Graduate Certificate in Biostatistics, and expects to graduate with an MPH in Epidemiology in May of 2017. Beth Ann is very passionate about epidemiological research and values the patient-perspective in advancing research.
Debra Duquette, CGC
Genomics Coordinator
Michigan Department of Health and Human Services
Debra Duquette, MS, CGC is the Genomics Coordinator for the Michigan Department of Health and Human Services. Since 2004, she has served as the project director/manager on multiple CDC cooperative agreements to ensure appropriate cancer genomics translation through partnerships, data, education, and policy. She is the Chair of the Lynch Syndrome Screening Network, and Co-Chair of the National Academy of Medicine Genomics Action Collaborative. She serves on the FORCE Scientific Advisory Board and XRAYS Steering Committee.
Marleah Dean Kruzel, PhD
Assistant Professor in Health Communication
University of South Florida
Dr. Marleah Dean Kruzel is an Assistant Professor in Health Communication at the University of South Florida. A BRCA2-positive patient herself, she also volunteers for FORCE and serves as a Steering Committee member for the ABOUT Network.
Marleah is a co-Investigator on the NIH-funded ABOARD study looking at outcomes in newly-diagnosed breast cancer patients undergoing genetic testing.
Lisa Schlager
Vice President of Community Affairs & Public Policy
Facing Our Risk of Cancer Empowered
As Vice President of Community Affairs & Public Policy, Lisa Schlager manages strategic partnerships and collaborations for FORCE. She also spearheads the organization’s legislative, regulatory, and research advocacy efforts. She developed and manages the FORCE Research Advocate Training Program, preparing consumers to engage in research advocacy on behalf of the HBOC community. As program manager for the ABOUT Network, she combines her ability to build alliances and empower advocates with patient-focused hereditary cancer research efforts.
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Piri Welcsh, PhD
Vice President of Education
Facing Our Risk of Cancer Empowered
Piri Welcsh, Ph.D., Vice President of Education Dr. Piri L Welcsh was finishing her PhD in Molecular Genetics at The Ohio State University when she read the groundbreaking research paper by Dr. Mary-Claire King describing the location of the first hereditary breast and ovarian cancer gene, BRCA1. Guided by this pioneering research, she committed herself to the study of inherited breast and ovarian cancer. Her postdoctoral project at the University of Texas Southwestern Medical Center was in collaboration with Mary-Claire’s groups and others to clone BRCA1. During this time, her maternal grandmother was diagnosed and died of breast cancer while her mother was also diagnosed and is currently a breast cancer survivor.
Piri joined Mary-Claire King’s laboratory at the University of Washington in 1996 and spent the next 20 years working with her and others identifying other hereditary breast and ovarian cancer genes as well as studying how BRCA1 and 2 normally function in cells. A few years ago, her mother was diagnosed with a second primary and her mother’s sister and her mother’s cousin were also diagnosed with breast cancer. Piri is a previvor of sorts in that she is part of a high-risk breast cancer “mystery family”-a family with a lot of breast cancer but no known mutation in any known breast cancer gene.
Piri and her wife Karen live in Seattle, WA with their B/G twins and another son. Her family absolutely loves living and playing in the Pacific Northwest!
Adina Fleischmann, LSW
Director of Support Programs
Sharsheret
Adina Fleischmann, LSW, Director of Support Programs at Sharsheret, is a graduate of Columbia University School of Social Work. Adina oversees Sharsheret’s cooperative agreement with the Centers for Disease Control and Prevention and directs the cancer support programs, guiding their development, implementation, and evaluation. Adina also advises and connects young women living with and at high risk of developing breast cancer or ovarian cancer with tailored support and resources.
Patricia A. Ganz, MD
Director, Cancer Prevention & Control Research
Jonsson Comprehensive Cancer Center,
Los Angeles, CA
Patricia A. Ganz, M.D., a medical oncologist, has been a member of the faculty of the UCLA School of Medicine since 1978 and the UCLA School of Public Health since 1992. Since 1993, she has been the Director of Cancer Prevention and Control Research at the Jonsson Comprehensive Cancer Center. In 1999, she was awarded an American Cancer Society Clinical Research Professorship for “Enhancing Patient Outcomes across the Cancer Control Continuum.” Dr. Ganz was elected to the Institute of Medicine (IOM) in 2007. She served on the National Cancer Institute Board of Scientific Advisors from 2002-2007 and on the American Society of Clinical Oncology (ASCO) Board of Directors from 2003-2006. She received the American Cancer Society Medal of Honor in 2010. Dr. Ganz is a pioneer in the assessment of quality of life in cancer patients, and has focused much of her clinical and research efforts in the areas of breast cancer and its prevention. At the Jonsson Comprehensive Cancer Center, she leads the scientific program focused on Patients and Survivors. Her major areas of research include cancer survivorship and late effects of cancer treatment, cancer in the elderly, and quality of care for cancer patients.
Leslie Hammersmith
RISE Legacy Advocate
Young Survival Coalition
Leslie Hammersmith was diagnosed with triple-negative breast cancer at the age of 36 and soon afterward discovered that she is BRCA1-positive. She began her journey as a breast cancer research advocate after participating in clinical trials during treatment and starting an affiliate of Young Survival Coalition in her hometown. Since 2008, Leslie has graduated from several well-known Cancer Research Advocacy programs including Project LEAD, Research Advocacy Network's Advocate Institute and Focus on Research Scholar Program, AACR Scientist<-->Survivor Program, Coalition of Cancer Cooperative Groups, NCCTG, and DOD Breast Cancer Center of Excellence Research Advocate Mentor Program. She was an advocate member of the Young Survival Coalition Research Think Tank, and continues her work to increase research and improve outcomes for young women facing breast cancer by representing YSC as a RISE Legacy Advocate on the Steering Committee for ABOUT Network and serving as a consumer reviewer for the Breast Cancer Research Program administered by the Department of Defense.
In her professional life, Leslie is Assistant Dean for Technology Enhanced Education at the University of Illinois College of Medicine at Peoria. She has 20 years of experience in higher education and faculty development in educational technologies.
Robin Karlin
Pittsburgh Peer Support Group Leader
Facing Our Risk of Cancer Empowered
Robin Karlin discovered that she has a BRCA1 mutation in January 2011 as a result of her 22-year-old son taking a genetic test. She is a Peer Support Group Leader for the Pittsburgh FORCE network and a participant in the FORCE Peer Navigation Program. She also serves as an advocate in the Magee Women's Cancer Research Center (WCRC) Breast Cancer Research Advocacy Network (BCRAN) which is part of the University of Pittsburgh Cancer Institute.
Melanie Nix, MBA
Co-Founder
Breast Cancer Comfort Site
Melanie A. Nix is a triple-negative breast cancer survivor; a fifth generation breast cancer patient who carries the BRCA1 gene mutation. A motivational speaker and author, she is the co-founder of Breast Cancer Comfort Site and serves on numerous health advisory councils and boards. Married with two children, she holds a Master of Business Administration from the Robert H. Smith School of Business and a Bachelor of Arts degree from the University of Virginia.
Carmen Pace, RN
Dallas Peer Support Group Leader
Facing Our Risk of Cancer Empowered
Carmen is a 5 year BRCA 2+ breast cancer survivor who has been a member of FORCE for four years and the ABOUT Network since its inception. As a registered nurse by profession, it is her desire to help and educate individuals on FORCE, the ABOUT Network, and the importance for all who are eligible, to be able to participate in research that could be helpful to future patients.
Chad Ramsey
Vice President of Policy
Ovarian Cancer Research Fund Alliance
Chad Ramsey is Vice President of Policy for the Ovarian Cancer Research Fund Alliance. Chad works with policymakers on Capitol Hill and organizational allies to implement the policy agenda and achieve OCRFA priorities. Prior to joining OCRFA, Chad was Director of Legislative Relations for the National Marrow Donor Program and also served as Director of Federal Legislation for the Brady Campaign to Prevent Gun Violence.
Lisa Rezende, PhD
Volunteer
Facing Our Risk of Cancer Empowered
Dr. Lisa Rezende found FORCE in 2008 when she was looking for high-quality accessible information as her mother, a long-term ovarian cancer survivor, considered genetic testing. After she and her mother discovered they both carried BRCA1 mutations, Lisa found support through FORCE as she navigated her options for managing her cancer risk. She soon began volunteering as a medical writer, developed materials for the FORCE website and newsletter, and helped to develop the clinical trials database.
Lisa brings over 20 years of science and education experience to her role on ABOUT’s Steering Committee. She earned her Ph.D. in Microbiology and Immunology from Albert Einstein College of Medicine, and completed four years of post-doctoral research at Harvard Medical School. She has extensive science writing experience, including a Mass Media Science and Engineering Fellowship from the American Association for the Advancement of Science (AAAS). As a Lecturer in the Department of Chemistry and Biochemistry at the University of Arizona, Lisa has taught science in person and through online courses to a variety of audiences including medical students, pre-nursing students, and science teachers.
She lives in Tucson, Arizona with her husband and two daughters.
Marisol Rosas
Helpline and Peer Navigator Program Director
Facing Our Risk of Cancer Empowered
Marisol saw her mother fight breast cancer when she was very young, only to lose her when she was 8 years-old to ovarian cancer. Since then, she always feared she would one day have those same fights.
Several years later, married and with two beautiful sons, she went for her routine mammogram, but given her family history, they suggested genetic counseling. It was time to face her fears and undergo genetic testing.
She tested positive. Knowing very well the pain left behind to those you love, Marisol decided to fight this, and to learn as much as possible. That is when she found FORCE, an incredible source of information with an even more incredible community of fighters like her. She knew she was not alone in this fight.
Marisol has since gone through her mastectomy and oophorectomy; she is a previvor, and proud of it. She knew it was time to give back and she is now in charge of the Helpline at FORCE. She is also involved in her Hispanic community and has participated in several conferences both at home and beyond our borders.
ABOUT is a Patient-Powered Research Network in PCORnet®, the National Patient-Centered Clinical Research Network, an initiative funded by the Patient-Centered Outcomes Research Institute (PCORI).
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