Advocates serve as the voice of the patient in the development and execution of our trials.
SWOG has two types of patient advocates - research advocates and community advocates.
Research advocates are our clinical trial experts. They are assigned to a committee and are involved in all aspects of trial design and development, ensuring that the concerns of patients - medical, logistical, emotional, financial - are addressed and that patients understand the risks and benefits of joining a trial.
Community advocates are our community experts. They work across committees to ensure a front-line patient view or advise on connecting with the communities, such as African Americans or military veterans, that they represent.
SWOG Cancer Research Network has the largest - and most experienced - group of advocates in the National Cancer Institute's National Clinical Trials Network. We're proud of our advocates and value their contributions to our work.
Jack Aiello, MS, EE, is the advocate on the myeloma committee and lives in San Jose, California. Jack has served on the NCI’s Myeloma Steering Committee, and currently serves on NCI’s Symptom Management and Quality of Life steering committee, as well as the Consumer Advocacy Committee for the Center for International Blood & Marrow Transplant Research. A mentor, speaker, and fundraiser, Jack is active with the International Myeloma Foundation, the Multiple Myeloma Research Foundation, and the San Francisco Bay Area Multiple Myeloma Support Group. He is a multiple myeloma survivor.
Rick Bangs, MBA, PMP, is the bladder cancer advocate on the GU committee, serves as chair of the patient advocate committee, and is a member of the SWOG executive advisory committee. He lives in Pittsford, New York. Rick has 30 years of experience in information technology and marketing. He is a member of the NCI Council of Research Advocates, the National Comprehensive Cancer Network bladder and penile cancer panel patient advocate, serves on the NCI Cancer Care Delivery Research Steering Committee and actively supports the Bladder Cancer Advocacy Network, including hosting the Bladder Cancer Matters podcast. He is a bladder and prostate cancer survivor.
Janice Choe is a community advocate representing the Asian-Pacific Islander community and lives in Foster City, California. Janice is an information technology audit manager and has more than 15 years of experience in risk management, process improvement, IT controls, and business and data analysis. Janice was part of the advocate team that helped establish MD Anderson Cancer Center’s Advanced Breast Cancer Clinic, which provides metastatic breast cancer patients with personalized treatments. Janice is an active patient advocate with MD Anderson, as well as Komen. A certified yoga instructor, she teaches restorative yoga for cancer patients and caregivers. Janice is a stage IV breast cancer survivor.
Tony Crispino is the prostate cancer advocate serving on the GU committee and lives in Las Vegas, Nevada. Tony has more than 38 years of experience in telecommunications, and is a long- time patient advocate, serving at SWOG since 2012. Tony is the Las Vegas chapter president of Us TOO, an international group which provides prostate cancer education and support. He is a member of the American Society for Clinical Oncology, the NCI’s Prostate Cancer Task Force, the American Urological Association, the American Society of Radiation Oncologists, the Prostate Cancer Advocates Forum, and the Society of Urologic Oncology. Tony has served on multiple panels writing guidelines on prostate cancer treatment and the use of molecular testing in prostate cancer. He was a grant reviewer for the Department of Defense, and has lobbied Congress on healthcare issues. He is a prostate cancer survivor.
Hildy Dillon, MPH, is the patient advocate on the lymphoma committee and the vice chair of the patient advocate committee. She lives in Teaneck, New Jersey. Hildy is retired after serving as senior vice president for education and support programs at Cancer Support Community, the largest nonprofit network of cancer support worldwide. A former vice president of MK&A, a healthcare stakeholder relations firm, she also led patient and professional programs at the Leukemia & Lymphoma Society for 14 years. Hildy served two terms on the NCI’s Lymphoma Steering Committee. She consults part-time as a strategic patient advocacy relations leader and volunteers to advocate for state and federal public health public policy initiatives.
Valerie Fraser is the advocate serving on the palliative and end of life care committee and lives in Huntington Woods, Michigan. She serves as an officer and director of research, advocacy, and board development for the Inflammatory Breast Cancer International Consortium. As a cancer research advocate, she has served on clinical trial working groups, scientific review panels steering committees, and advisory groups and as advocate consultant and peer reviewer on grants for the Department of Defense, California Breast Cancer Research Program, Patient-Centered Outcomes Research Institute (PCORI), Komen, and others. Valerie is a PCORI ambassador and works with the National Coalition of Cancer Survivorship and International Cancer Education to advance quality care, research, education, and public policy. She is a frequent speaker on topics such as advocacy, patient communication, quality care, and cancer education and research. Valerie is a survivor of inflammatory breast cancer, and served as a caregiver and advocate for both parents, whom she lost to cancer.
Eileen Z. Fuentes, MA, CHHC is a community advocate and lives in New York, New York. She works full-time managing the care for breast and gynecologic oncology patients at Columbia University’s Herbert Irving Comprehensive Cancer Center where she addresses disparities in cancer care and uses communication strategies that are culturally appropriate. She also founded and led bilingual patient wellness programs. Eileen has over 15 years of human resources management in healthcare experience and holds a master’s degree in health education from Columbia University, Teachers College. She also serves as patient advocate for National Cancer Institute’s (NCI) Cancer Care Delivery Research Steering Committee, the Society of Integrative Oncology’s (SIO) Health Equity & Inclusion Task Force, and the National Comprehensive Cancer Network (NCCN).
Amy Geschwender, PhD, is the advocate serving on the symptom control and quality of life committee and lives in Lincoln, Nebraska. Amy also serves on SWOG’s digital engagement and publications committees. She is a molecular and cellular biologist and the former principal scientist at LI-COR Biosciences, an international scientific products company, where she focused on marketing communications and wrote both scientific and promotional content. Amy has served as a grant reviewer for the American Cancer Society, and is a brain cancer survivor.
Samantha Guild, JD, is the patient advocate on the melanoma committee and lives in Sacramento, CA. Samantha is president of AIM at Melanoma, a non-profit dedicated to melanoma research, advocacy and patient education and support. Prior to leading the organization, Samantha served as AIM’s director of education, public policy, and advocacy and was responsible for launching initiatives in immunotherapy and oncology nursing, and in helping to pass indoor tanning legislation nationwide – including the country’s first tanning ban for minors in California. Samantha serves as an advocate for ECOG-ACRIN, the National Comprehensive Cancer Network, and the American Academy of Dermatology, and as a stakeholder for the Department of Defense and and the Cancer Prevention and Research Institute of Texas. She sits on ASCO’s melanoma guidelines committee and received the president’s citation from the American Academy of Dermatology. She is a melanoma survivor.
Marcia K. Horn, JD, is the advocate serving on the early therapeutics and rare cancers committee and lives in Phoenix, Arizona. Since 1996, Marcia has served as president and CEO of ICAN, the International Cancer Advocacy Network, which assists stage IV cancer patients across the U.S. and in 54 countries. She serves on the Banner MD Anderson's IRB in Phoenix and the ASCO TAPUR Study Molecular Tumor Board. She is the U.S. research advocate for the Stand Up 2 Cancer (SU2C) Molecular Early Detection of Colon Cancer Dream Team and is one of the advocates for the SU2C Dream Team on Lung Cancer Early Interception. Marcia is director of the Exon 20 Group, an international multi-stakeholder coalition overseeing the advocacy and navigation for hundreds of pan-tumor EGFR exon 20 and HER2 exon 20 insertion mutation patients. Her mother was a 16-year HER2 positive breast cancer survivor.
Cheryl Jernigan, CPA, FACHE, is the advocate serving on the prevention and epidemiology committee and lives in Kansas City, Missouri. Cheryl is a 25-year breast cancer survivor with over 20 years of research advocacy experience. She is a co-survivor with her husband, who had HPV tonsil cancer and died in 2018 of metastatic prostate cancer. Cheryl is the lead advocate for Patient & Investigator Voices Organizing Together (PIVOT), a University of Kansas Cancer Center initiative, and serves on the cancer center’s NCORP scientific leadership and catchment area committees. She is active with the Frontiers Clinical & Translational Science Award, the Kansas Institute of Precision Medicine’s Center for Biomedical Research Excellence (COBRE), and the Greater Plains Collaborative, a clinical research data network. Nationally, she was a member of Susan G. Komen’s scientific advisory board, and was a founding member of their Advocates in Science program , where she continues to serve on the steering committee. She is a Komen Scholar and active in their BD4BC (Big Data for Breast Cancer) initiative. Other service includes the external advisory board of Rutgers Cancer Institute of New Jersey, the NCI’s Central Institutional Review Board for adult late phase trials, and the steering committee of the Clinical Trials Transformation Initiative.
Judy Johnson, MBA, is the advocate serving on the lung committee and the lung community engagement subcommittee and lives in St. Louis, Missouri. Judy is a member of the SWOG-CTP Scientific Advisory Board, and a member of the SWOG 1415-CD TrACER external stakeholder advisory group. She lives in St. Louis, Missouri. Judy serves as an advocate member on the NCI Thoracic Malignancy Steering Committee, the NCI Patient Advocate Steering Committee, and the NCTN Core Correlative Sciences Committee B. She has five years of experience as a clinical trials study coordinator overseeing lung trials at the Siteman Cancer Center, and served for four years on a new protocol review committee on Washington University’s Institutional Review Board. She is also a member of Siteman Cancer Center’s external advisory board and Washington University’s Leukemia Specialized Program in Research Excellence (SPORE). She is a breast cancer survivor, and lost her father and father-in-law to lung cancer.
La’Shae Johnson is a community advocate representing rural residents and lives in Golden Meadow, LA. She has been a peer navigator, message board moderator, helpline volunteer, and research advocate for Facing Our Risk Empowered (FORCE), a nonprofit supporting those with hereditary cancer risk, and is an advocate with the Georgetown Lombardi PEACE Coach Study. La’Shae has been diagnosed with hereditary breast and ovarian cancer syndrome and has been treated for melanoma in situ.
Lee Jones, MBA, is the advocate serving on the survivorship committee and lives in Arlington, Virginia. Lee is retired and has extensive executive experience in corporate, government, and non-profit settings, with special expertise in financial systems. A stage IV colon cancer survivor, Lee is a long-time cancer research advocate who serves on the Georgetown University Oncology and NCI Central (Early Phase) Institutional Review Boards, and has reviewed research proposals for groups such as the Department of Defense, the American Society of Clinical Oncology, and the Patient-Centered Outcomes Research Institute (PCORI). Lee is a member of the board for the Cancer Action Coalition of Virginia and on the Ruesch Center Advisory Board at Georgetown University. He served a term on PCORI’s Clinical Trials Advisory Panel, has co-authored two published papers on cancer research issues, and volunteers with Fight Colorectal Cancer, Friends of Cancer Research, and the Alliance for Regenerative Medicine.
Howard Krongard, JD, is a community advocate representing the older adult cancer community and lives in Parkland, Florida. Howard is the former inspector general of the U.S. Department of State, the former general counsel of Deloitte & Touche, and the former chair of the board of External Auditors of the Organization of American States. Howard is active with Above + Beyond Cancer and the Prostate Cancer Clinical Trials Consortium, and as a metastatic prostate cancer patient, he is a participant in the Ironman Registry for men with advanced prostate cancer. He was an All-American lacrosse player at Princeton University, an inductee to the National Lacrosse Hall of Fame, and was twice named the outstanding post-college player in the U.S. He is significantly involved in Native American activities, including NativeVision and the Center for American Indian Health, both based at Johns Hopkins University.
Florence Kurttila, MS, is the colorectal cancer advocate serving on the GI committee, and lives in Citrus Heights, California. Florence is a retired human resources executive and a long-time patient advocate. She is a member of American Society for Clinical Oncology, and serves on the patient advisory committee for ASCO’s CancerLinQ big data project and has served on many ASCO committees and review boards. She serves on the clinical trials curation team for Fight Colorectal Cancer and on the Kaiser Patient Education Committee in Northern California. She also serves on the California Dialogue on Cancer, a public health coalition developing a five-year plan to reduce the cancer burden across the state. Previously, she served as a grant reviewer for the Department of Defense, on the grassroots action committee for the Colorectal Cancer Coalition, and with the American Cancer Society in various capacities. She is a 20-year colon cancer survivor.
Ginny Mason, RN, is one of two advocates serving on the breast committee and lives in West Lafayette, Indiana. Ginny also serves on SWOG’s digital engagement committee. She is a registered nurse and the executive director of the Inflammatory Breast Cancer Research Foundation. Ginny has been a board member, advisor, mentor, speaker, or grant reviewer for a variety of organizations, including ASCO, the Department of Defense, the American Association of Cancer Research, the U.S. Food and Drug Administration, and Komen Advocates in Science. She was diagnosed with inflammatory breast cancer in 1994.
Anne Marie Mercurio is a member of the SWOG digital engagement committee and lives in Huntington, New York. She serves in two roles at the Herbert Irving Comprehensive Cancer Center at Columbia University – on patient advocate board and the executive board for the Minority and Underserved Community Oncology Research Program (MU-NCORP). She also serves on the external advisory boards for the Lurie Comprehensive Cancer Center and the University of Arizona Comprehensive Cancer Center. In addition to serving on grant review panels for Department of Denfense and the American Society of Clinical Oncology, she is a site reviewer for NCI cancer center grant renewals, and a member of Medidata’s Patient Design Team. Anne Marie helps ensure the patient perspective is incorporated into all aspects of the clinical trial process, and is passionate about the use of digital tools as a means to foster dialogue between cancer patients, physicians, and researchers and to reach a global audience. Anne Marie is a survivor of lobular breast cancer and was her late mother’s primary caregiver throughout her eight-year treatment for metastatic breast cancer.
Joël Pointon, MSPH, is a community advocate representing the LGBTQ community and lives in San Diego, CA. Joël is the principal and founder of JRP Charge, which provides consulting services on multi-unit dwelling electric vehicle charging infrastructure challenges. He is an active member of and contributor to several groups within the MaleCare Health Unlocked community, including the Advanced Prostate Cancer group and the Gay Men with Prostate Cancer group. He participates in a study of gay men with prostate cancer and their recovery at the University of Minnesota. He has also been active in health advocacy as a district liaison volunteer for AARP for San Diego County and has been invited by the Prostate Cancer Foundation to coordinate a Cancer Patient Experience Module for their 2021 annual conference. Joël is a prostate cancer survivor.
Elda Railey is one of two advocates serving on the breast committee, and lives in the Auburn, Alabama area. Elda is co-founder of the Research Advocacy Network, a non-profit organization dedicated to advancing research through advocacy and education. Elda specializes in advocacy collaborations and training. She was a long-time executive at Susan G. Komen, and serves as chair of the patient advisory committee for ASCO’s CancerLinQ big data project. She has served on committees at the National Cancer Institute, UT Southwestern Cancer Center, Mayo Clinic, MD Anderson Cancer Center, and the National Academy of Medicine.
Allison Rosen, MS, is a community advocate representing the adolescent and young adult (AYA) cancer community and is a member of the SWOG digital engagement committee and lives in Houston, TX. Allison serves as a project director at the Center for Health Promotion and Prevention Research at the University of Texas Health Science Center at Houston. Allison serves as a member of the Young Adult Advisory Council and the Patient and Family Advisory Council at MD Anderson Cancer Center, the Teen Cancer American Advisory Board, the Executive Committee of the Cancer Alliance of Texas, the Colorectal Cancer Alliance Never Too Young Advisory Board, and the National Colorectal Cancer Roundtable Steering, She is as a Fight Colorectal Cancer ambassador and research advocate. She serves in various other leadership roles with the goal of educating, advocating, and collaborating to help spread awareness about cancer. She is a colorectal cancer survivor.
Barbara Segarra-Vazquez, DHSc, is the advocate serving on the cancer care delivery committee, and lives in San Juan, Puerto Rico. Barbara is dean of the School of Health Professions at the Medical Sciences Campus of the University of Puerto Rico. She is also the principal investigator of the Hispanic Clinical and Translational Research Education and Career Development (HCTRECD) program funded by the National Institute on Minority Health and Health Disparities. She has deep experience in clinical research and cancer trials through organizations such as the Department of Defense, the American Association of Cancer Research, Susan G. Komen, and the Puerto Rico Cancer Control Commission. She is the Vice-Chair of the Susan G. Komen Advocates in Science Steering Committee and active in Advocates for Collaborative Education. She speaks Spanish, and has an interest in addressing minority health disparities. Barbara is a two-time breast cancer survivor.
Carole Seigel, MBA, is the pancreatic cancer advocate on the GI committee and also serves on the palliative and end of life care committee and lives in Brookline, Massachusetts. Carole is honored to be an Advocacy Champion at the President’s Circle level at the American Society for Clinical Oncology (ASCO). She is a grant reviewer for ASCO, the NCI and the Department of Defense, a clinical reviewer for the Journal of Clinical Oncology, and serves as an advocate advisor for projects run by the National Pancreas Foundation, the Research Advocacy Network and the Patient-Centered Outcomes Research Institute. Carole is a political advocate for the ASCO Advocacy Summit and the American Cancer Society Cancer Action Network. She is a founding member of the Patient and Family Advisory Council at the Massachusetts General Hospital Cancer Center. Carole’s career was as a practice management consultant to hospitals and physicians. Her husband died of pancreatic cancer.
Jonathan Sommers is a member of the digital engagement committee and the adolescent and young adult committee and lives in Santa Monica, California. Jonathan is a filmmaker and producer, a patient advocate, and a testicular cancer survivor. At Digital Health Networks, he produces content with particular interests in increasing public awareness of NCI clinical trials, issues facing the adolescent and young adult cancer community, and patient rights. His advocacy work includes creating the USC Norris Cancer Center’s & UCLA’s testicular cancer initiative that reformed the Los Angeles Unified School District’s health education curriculum and providing peer counseling to numerous cancer patients. As a member of the SWOG digital engagement committee, he received a pilot grant from The Hope Foundation for Cancer Research to produce the three-part web-series, Cancer Briefs, which seeks to test whether infotainment can raise public awareness of SWOG and NCI trials.
Gail Sperling, MPH, is the advocate serving on the leukemia committee and on the MyeloMATCH master protocol and lives in Huntington Beach, California. Gail worked for nearly 20 years at the Leukemia & Lymphoma Society, where she served as senior manager of the Information Resource Center, a critical source of general information, medical and clinical trial referrals and connections to support services that help patients and their families navigate through cancer treatment. Gail has more than 30 years of experience as a healthcare educator and program manager, building and running a hospital-based women’s health program, a community-based health program, a cancer community outreach initiative, and several patient advocacy programs. She is the daughter of a cancer survivor, and has many friends and loved ones who have survived their disease.
Robert E. Taylor is a community advocate representing the African American cancer community and lives in Romeoville, Illinois. Rob is director of Abundant Peace Ministries and Open Door Drug and Rehabilitation Ministry, which support men and women who are incarcerated, homeless, or struggling with drug addiction. Rob is also a volunteer chaplain at Stateville Prison and an associate professor at Divine Hope Seminary, both located in Joliet, IL. He is a peer mentor with The Life Raft Group, a support group for people diagnosed with gastrointestinal stromal tumors or GISTs. He also visits hospitals, nursing homes, and VA medical centers to visit cancer patients and help them self-advocate, and is working with Cook County Health Systems to implement a cancer advocacy program. He is a GIST survivor.
Desirée A. H. Walker is the advocate serving on the recruitment and retention committee and lives in New York, NY. Desirée has more than 17 years of experience as a health educator, trainer, and coach, with extensive service with SHARE and the Witness Project of Harlem. Both programs serve African-American communities in New York City. She serves on the patient advisory and community advisory boards at the Herbert Irving Comprehensive Cancer Center at Columbia University and the Tisch Cancer Institute at Mount Sinai. She also serves as a research reviewer for the Conquer Cancer Foundation, the Cornell Center for Health Equity, Patient-Centered Outcomes Research Institute (PCORI), and the Department of Defense Breast Cancer Research Program. She is president of the board of the Young Survival Coalition and a member of the NCI’s Central Institutional Review Board. Currently, she is working on research projects with the Columbia University Mailman School of Public Health and the University of Wisconsin-Madison as a patient advocate, and as a co-patient investigator on a research project with Memorial Sloan Kettering Cancer Center. She is a two-time breast cancer victor.
Bruce A. Wright is a community advocate representing military veterans and lives in Ladera Ranch, California. Bruce is a retired U.S. Navy commander, where he served for more than 20 years. Bruce is a Vietnam War veteran who served three tours of duty, work that exposed him to Agent Orange, which caused his cancers. Bruce worked in military aerospace for 30 years, and continues to be active with the CLL Society, a non-profit, peer-to-peer support, education and advocacy organization. For nearly 10 years, he has served in several CLL Society roles, including senior support group advisor, overseeing 10 groups across the country, as well as patient educator, patient advisory board member, and veteran advisor, which has allowed him to mentor over 75 vets navigating the U.S. Department of Veterans Affairs. Bruce has deep knowledge of the Veterans Benefits Administration, which oversees disability, insurance, and other benefits and the Veterans Health Administration, the largest integrated health care system in the country. Bruce is a survivor of chronic lymphocytic leukemia and prostate cancer.
Peggy Zuckerman, M.Ed., is the kidney cancer advocate serving on the genitourinary committee and lives in Long Beach, California. A former educator, Peggy holds a certificate in patient advocacy from UCLA. She writes a kidney cancer blog, www.peggyrcc.com, and is a member of patient forums such as www.SmartPatients.com. Like many kidney cancer patients, she was misdiagnosed prior to receiving her stage IV diagnosis, which is why she advocates for access to patient data through the Society to Improve Diagnosis in Medicine and the Society of Participatory Medicine. She is a patient member of the scientific ethics advisory group for Roche/Genentech, a spokesperson for Action to Cure Kidney Cancer, and an “expert patient” at KCCure.org. Peggy has served on grant review panels for the Department of Defense and the Patient-Centered Outcomes Research Institute (PCORI), and has lobbied Congress for more funds to expand such research. Most recently, Peggy was chosen to serve on the new patient and caregiver advisory council of the Kidney Cancer Association. As a current and past clinical trial participant, she is aware of the critical need to recruit a more diverse participant base, particularly rural patients, and has a special interest in immunotherapies, and how molecular characteristics of tumors may guide treatments. She is a kidney cancer survivor.