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 research advocate on the myeloma committee and lives in San Jose, California. Jack has served on the National Cancer Institute’s myeloma steering committee and 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 SFBay Area Multiple Myeloma Support Group. He is a multiple myeloma survivor.
Rick Bangs, MBA, PMP, is the bladder cancer research advocate on the GU committee, and serves as chair of the patient advocate committee and on the SWOG executive advisory committee. He lives in Pittsford, New York. Rick has 30 years of experience in information technology and marketing, and advised on the redesign of ClinicalTrials.gov. He is co-chair of the NCI Patient Advocate Steering Committee, and serves on the NCI Cancer Care Delivery Steering Committee, the NCI Council of Research Advocates, the National Comprehensive Cancer Network (NCCN) Bladder and Penile Cancer Panel, ASCO guideline committees, and actively supports the Bladder Cancer Advocacy Network. He is a bladder and prostate cancer survivor.
Christabel Cheung, PhD, MSW, is the research advocate on the adolescent and young adult (AYA) committee, and lives in Baltimore, Maryland. Christabel is an assistant professor at the University of Maryland School of Social Work, and a researcher focused on cancer survivorship, disparities, social determinants, health care delivery and access, AYA oncology, financial social work, military social work, and racial/ethnic minority populations. Her advocacy work includes serving as teaching faculty for the NCI-funded Minority Training Program in Cancer Control Research (MTPCCR), a member of NCI’s NCORP AYA Working Group, a member of Global AYA Cancer Congress' Military Working Group, and as a corresponding member of the minority and underserved NCORP at the University of Hawaii Cancer Center. She writes the cancer blog www.JadeGangster.com, and is a two-time AYA survivor of Hodgkin’s lymphoma.
Tony Crispino is the prostate cancer research advocate serving on the GU committee, and lives in Las Vegas, Nevada. Tony has more than 30 years of experience in telecommunications, and is a long-time patient advocate. Tony is the president of the UsTOO Prostate Cancer Support and Education chapter in Las Vegas, and has been active with the Nevada Cancer Coalition, the Prostate Cancer Advocates Forum, the American Urological Association, and ASCO. He is a former grant reviewer for the Department of Defense, and has lobbied Congress on healthcare issues. He is a prostate cancer survivor.
Michelle Denault, MPA, is a community advocate and lives in Groveland, Massachusetts. Michelle is pursuing a doctoral degree in public administration and works as a consultant for non-profits, providing organizational development, strategic planning and operations support. She has extensive experience as an educator and program manager for a number of tribal government and education programs serving Native Americans in California, including co-founding a behavioral wellness non-profit. Michelle is of Mi’gmaq descent from the Maritimes of Canada and has worked with traditional Mi’gmaq elders. She is a co-moderator of a Facebook group for CAR-T cell therapy patients and is a survivor of stage IV lymphoma, and participated in a CAR T-cell immunotherapy clinical trial.
Hildy Dillon, MPH, is the research advocate on the lymphoma committee and the vice chair of the SWOG patient advocate committee. She lives in Teaneck, New Jersey. Hildy is national senior vice president, program and education, for 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 and Lymphoma Society for 14 years. Hildy serves as an advocate on the National Cancer Institute’s lymphoma steering committee and as a volunteer for Camp Sunshine, a Maine retreat for children with life-threatening illnesses and their families.
Valerie Fraser is the research 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, BA, is a community advocate and lives in New York, New York. Eileen is a clinical coordinator in the division of breast and gynecologic oncology at Columbia University’s Herbert Irving Comprehensive Cancer Center, where she helps patients navigate treatment, set care goals, and connect with social services. Addressing disparities in cancer care, and using care and communication strategies that are culturally appropriate, is a central part of her work. Eileen manages Columbia’s Woman-to-Woman support program for women with gynecologic cancers and is the founder and former director of the university’s Patient-Centered Wellness Series, a bilingual cancer program that covers diet, exercise, and traditional and complementary medicine treatments. She is currently pursuing a master’s degree in health education at Columbia and speaks nationally on patient navigation, healthy eating, and Latinx empowerment. Eileen is of Dominican descent and fluent in Spanish. She is a survivor of triple negative breast cancer.
Amy Geschwender, PhD, is the research 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. She focused on marketing communications for LI-COR and produced scientific and promotional content. Amy is a grant reviewer for the American Cancer Society, and is a brain cancer survivor.
Marcia K. Horn, JD, is the research 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. Marcia oversees patient services and research advocacy at ICAN. She was the first chairman of DIA's Patient Engagement Community and is a PCORI Ambassador. Marcia served on the Banner MD Anderson's oncology institutional review board for Arizona and is now a member of Banner Health's IRB in Phoenix. She is the advocate for the Stand Up 2 Cancer Molecular Early Detection of Colon Cancer Dream Team and is a member of ASCO's TAPUR Study Molecular Tumor Board. Marcia is a co-inventor of a clinical trials search engine, Remission Coach, ® in development. She coordinates the international multi-stakeholder coalition, the Exon 20 Group, for rare lung cancer mutations. Her mother was a 16-year HER2 positive breast cancer survivor.
Cheryl Jernigan, CPA, FACHE, is the research advocate serving on the prevention and epidemiology committee and lives in Kansas City, Missouri. Cheryl has more than 15 years of experience as a cancer research advocate, and serves on the Susan G. Komen Scientific Advisory Board, as well as an advisor for Komen’s BD4BC big data initiative and a member of the Komen Scholars and Advocates in Science programs. She is the lead advocate for the University of Kansas Cancer Center’s Patient Investigator Voices Organizing Together (PIVOT) and the Medical Center’s clinical data research network (PCORnet). Cheryl is active with the Patient-Centered Clinical Research Network (PCORI), the Clinical Trials Transformation Initiative, the Multi-Regional Clinical Trails Center and the NCI’s Central Institutional Review Board. She is a breast cancer survivor, and her husband is a metastatic prostate cancer and a HPV tonsil cancer survivor.
Judy Johnson, MBA, is the research advocate serving on the lung committee and lives in St. Louis, Missouri. Judy is a former clinical trials coordinator overseeing lung cancer trials at the Siteman Cancer Center, and served on the institutional review board at Washington University. Judy has participated with the Department of Defense, Komen, and Free to Breathe as a grant reviewer, is a member of the Komen Advocates in Science, and served as a former ACRIN patient advocate. She is a member of Siteman Cancer Center’s external advisory board, and serves on the Washington University Leukemia Specialized Program of Research Excellence. Judy is a breast cancer survivor, and her father battled lung cancer.
Lee Jones, MBA, is the research advocate serving on the survivorship committee, and lives in Arlington, VA. Lee is semi-retired and has extensive executive and management experience in corporate, government, and non-profit settings, with special expertise in finance and financial systems. A Stage 4 colon cancer survivor, Lee is a long-time cancer research advocate who serves on the Georgetown University Oncology and two other Institutional Review Boards, and has reviewed grant and contract proposals for groups such as the Department of Defense and the Patient-Centered Outcomes Research Institute. Lee is a member of the work group writing the next five-year Virginia Cancer Plan, and volunteers as a research advocate with Fight Colorectal Cancer.
Florence Kurttila, MS, is the colorectal cancer research advocate serving on the GI committee, and lives in Citrus Heights, California. Florence is a human resources executive and a long-time patient advocate and fundraiser. She is a member of ASCO, and serves on the patient advisory committee for ASCO’s CancerLinQ big data project and its Colorectal Measure Panel. She is an advisor to Fight Colorectal Cancer, a former grant reviewer for the Department of Defense, and has served as a legislative ambassador for the American Cancer Society. She has been active with the California Colorectal Cancer Coalition and the national Colorectal Cancer Coalition’s Grassroots Action Committee. She is a colon cancer survivor.
Ginny Mason, RN, is one of two research advocates serving on the breast committee and lives in West Lafayette, Indiana. Ginny also serves on SWOG’s digital engagement committee. She is an oncology nurse and the executive director of the Inflammatory Breast Cancer Research Foundation. She also works as a medical consultant. Ginny has been a board member, advisor, mentor, 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.
Anne Marie Mercurio is a research advocate and member of the SWOG digital engagement committee. She lives on Long Island, New York. She is a member of the executive board and the patient advocate committee for the National Cancer Institute’s (NCI) Minority and Underserved Community Oncology Research Program (MU-NCORP) at the Herbert Irving Comprehensive Cancer Center at Columbia University, and also serves on the external advisory board for the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Anne Marie is a peer grant reviewer for the Congressionally Directed Medical Research Programs and is a site reviewer for NCI cancer center grant renewals. A graduate of National Breast Cancer Coalition’s Project LEAD, Anne Marie now serves as an advocate for the National Coalition for Cancer Survivorship, and as a mentor in the American Association for Cancer Research’s Scientist-Survivor Program. She advises researchers in the Kuhn/Hicks lab at University of Southern California, the Reis-Filho and Chandarlapaty labs at Memorial Sloan Kettering Cancer Centers, and the Franco lab at Children’s Hospital of Philadelphia. Anne Marie is a co-author on several peer reviewed publications and a contributor to the book “Breast Cancer: Global Quality Care.” Anne Marie is passionate about the use of digital tools, specifically Twitter, as a means to foster two-way dialogue between cancer patients and physicians and to reach a global audience. Anne Marie is a survivor of lobular breast cancer and is care-helper to her mother, who is living with metastatic breast cancer.
Elda Railey is one of two research advocates serving on the breast committee, and lives in Carrollton, Texas. Elda is co-founder of the Research Advocacy Network, the only U.S. non-profit organization dedicated to advancing research through advocacy. 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, and the Institute of Medicine.
Barbara Segarra-Vazquez, DHSc, is the research advocate serving on the cancer care delivery committee, and lives in San Juan, PR. Barbara is dean of the School of Health Professions at the Medical Sciences Campus of the University of Puerto Rico. She also directs the Post-Doctoral Master in Clinical and Translational Research Program and the Clinical Laboratory Sciences Program at the university. 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 a Spanish speaker, and has an interest in addressing minority health disparities. Barbara is a two-time breast cancer survivor.
Carole Seigel, MBA, is the pancreatic cancer research advocate serving on the GI committee and lives in Brookline, Massachusetts. Carole also serves on SWOG’s palliative care working group. She is a practice management consultant to hospitals and physicians. Carole is a founding member of the patient and family advisory council at the Massachusetts General Hospital Cancer Center, an ambassador team leader for the American Cancer Society Cancer Action Network, and a member of the National Pancreas Foundation. She also serves as an advocate advisor for projects run by the Patient-Centered Outcomes Research Institute and the Research Advocacy Network. She has served as a grant reviewer for the NCI, ASCO, and the Department of Defense. Carole’s husband died of pancreatic cancer.
Jonathan Sommers is a research advocate and member of the SWOG digital engagement committee. He lives in Santa Monica, California. Jonathan is a filmmaker and producer, a patient advocate, and a testicular cancer survivor. At TV4 Entertainment, he produces digital content, with a particular interest in increasing public awareness of NCI clinical trials, issues facing the adolescent and young adult cancer community, and patient rights. His advocacy work includes serving as chief patient advocate for Neuhope, 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 seek to test whether infotainment can raise public awareness of SWOG and NCI trials. Jonathan also serves on SWOG’s adolescent and young adult committee and has been nominated for the Leukemia & Lymphoma Society’s 2020 Man & Woman of The Year award.
Gail Sperling, MPH, is the research advocate serving on the leukemia committee and lives in Huntington Beach, California. Gail has worked since 2000 at the Leukemia & Lymphoma Society, where she currently serves 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.
Peggy Zuckerman, M.Ed., is the kidney cancer research advocate serving on the genitourinary committee and lives in Long Beach, CA. A former educator, Peggy has extensive cancer advocacy experience and holds a certificate in patient advocacy from UCLA. She writes a kidney cancer blog and writes extensively on patient forums, and serves as a member the Roche Scientific Ethics Advisory Group. Peggy has reviewed research grants for the Department of Defense and the Patient-Centered Outcomes Research Institute, served as a lobbyist and spokesperson for Action to Cure Kidney Cancer, and helped launch the kidney cancer support group at City of Hope Medical Center. She is a kidney and breast cancer survivor, and a current and past clinical trial participant.