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 advocate emeritus, having served on the myeloma committee, and he 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, and he currently represents SWOG on the NCTN Accrual Core Team. He is a multiple myeloma survivor.
Roberta Albany serves as a patient advocate with SWOG’s breast committee and lives in Mt. Penn, Pennsylvania. Since her 2013 diagnosis with breast cancer, she has committed herself to serving as a voice for the voiceless, especially those in underrepresented communities. With this goal in mind, she founded and serves as CEO of Cancer in the Know, which focuses on ameliorating the impact of breast cancer in the Black/African American community. She has worked with numerous advocacy organizations, including the Tigerlily Foundation, the National Breast Cancer Coalition, and the American Cancer Society and has served as a reviewer with the Department of Defense and the Pennsylvania Breast Cancer Coalition. In November of 2021, Roberta was the recipient of the Donna Noce Colaco Going Beyond Award from Living Beyond Breast Cancer.
Rick Bangs, MBA, PMP, is an advocate emeritus, having formerly served as the bladder cancer advocate on the genitourinary committee. Rick is also chair emeritus of the patient advocate committee. He lives in Pittsford, New York. Rick has 30 years of experience in information technology and marketing. He is the National Comprehensive Cancer Network bladder and penile cancer panel patient advocate, serves on the NCI Cancer Care Delivery Research Steering Committee Epigenetics SPORE, and actively supports the Bladder Cancer Advocacy Network, including hosting the Bladder Cancer Matters podcast. He is a bladder and prostate cancer survivor.
Tony Crispino is an advocate emeritus, having formerly served as the prostate cancer advocate on the genitourinary 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 an advocate emeritus and was formerly patient advocate on the lymphoma committee. She is also vice chair emeritus 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.
Laura Esfeller, MA, is the kidney cancer advocate serving on the genitourinary committee and lives in Rancho Cucamonga, California. Diagnosed with stage IV papillary renal cell carcinoma at the age of 29, Laura eventually joined the landmark S1500 PAPMET kidney cancer trial and was randomized to cabozantinib, to which she had a complete response. She serves on the patient advisory board of KCCure and is a contributing writer to Patients Rising. She has also served as a panelist and/or reviewer with the Kidney Cancer Association, KidneyCAN, the NCI, and the Department of Defense. She is director of marketing services for the San Manuel Band of Mission Indians and writes the blog singlewhitekidney.wordpress.com.
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.
Lauren Fryzel is the community advocate for the adolescent and young adult cancer committee. Lauren was diagnosed with Hodgkin’s lymphoma at the age of 18. After she finished her treatment and returned to college, she joined the American Cancer Society’s Colleges Against Cancer program, through which she learned about fundraising, programming, and advocacy. She served as president of her chapter in her senior year, and her advocacy efforts included lobbying at the Michigan state capitol. After college she worked for four years with the American Cancer Society and is now a patient and community outreach manager with the Leukemia and Lymphoma Society, where she serves as a local advocate for patient access to resources and programs.
Eileen Z. Fuentes, MA, is a community advocate representing the Latinx community and lives in New York City. She is currently manager of patient relations at Memorial Sloan Kettering Cancer Center and previously worked at Columbia University Irving Medical Center, where she coordinated the care and services for breast and gynecologic oncology patients and developed a bilingual wellness program for those in treatment. In addition, Eileen has extensive human resources management in healthcare experience and holds a master’s degree in health education from Columbia University Teachers College. She has been recognized for her advocacy work and serves as patient advocate for the National Cancer Institute (NCI) Cancer Care Delivery Steering Committee; the Society for Integrative Oncology (SIO) Health Equity, Inclusion, & Belonging Task Force; and the New York City Nutrition Education Network (NYCNEN). Eileen is a triple negative breast cancer survivor.
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.
Tricia Hernandez, MS, is the advocate serving on the lymphoma committee and lives in Avondale, GA. She is senior manager for community engagement with the Leukemia & Lymphoma Society, working to improve engagement with patients, caregivers, healthcare professionals, and volunteers. Her areas of focus include disease management and health disparities, community partnerships, and access to cancer education. With LLS, she has worked with the Comprehensive Cancer Control National Partnership and the Adolescent and Young Adult Advisory Group. Tricia is a survivor of Hodgkin lymphoma.
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 Health'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. She also serves as a research advocate for the NCI’s Lung SPORE (UT Southwestern-MD Anderson Cancer Center). Marcia is vice president of the Biomarker Collaborative and executive director of the Exon 20 Group, an international multi-stakeholder coalition overseeing the advocacy and navigation for hundreds of EGFR exon 20 and HER2 exon 20 insertion driven non-small cell lung cancer 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.
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.
Florence Kurttila, MS, is the colorectal cancer advocate serving on the gastrointestinal 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, BSN, is one of two advocates serving on the breast committee and lives in Virginia. 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 served as a board member, advisor, mentor, speaker, and grant reviewer for a variety of organizations, including ASCO, the Department of Defense, the American Association for Cancer Research, the U.S. Food and Drug Administration, and the Florida Breast Cancer Foundation. She is a member of Komen Advocates in Science and represents Indiana University Simon Cancer Center in the Translational Breast Cancer Research Consortium (TBCRC). She was diagnosed with inflammatory breast cancer in 1994 and endometrial cancer in 2019.
Anne Marie Mercurio is co-chair of the patient advocate committee and is a member of the SWOG executive advisory committee. She also serves as patient advocate for the SWOG digital engagement committee and lives in Ponte Vedra Beach, Florida. She serves in two roles at the Herbert Irving Comprehensive Cancer Center at Columbia University – on the 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 the Department of Defense 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.
Darrell S. Nakagawa is the bladder cancer patient advocate with the GU committee and lives in Schaumburg, IL. He serves as a patient advocate with the Bladder Cancer Advocacy Network (BCAN), contributing his skills and expertise to the BCAN Think Tank, Patient Summit, and Walk to End Bladder Cancer. He has also served as development committee lead for BCAN’s Chicago chapter. As a patient advocate with Northwestern Medicine, Darrell has served as a patient education webinar facilitator and project manager. Currently president of DN Direct, Darrell has had a career in continuous improvement consulting, organizational transformation, process excellence, and marketing communications with organizations including Philips Lighting, Sears Holdings, Sara Lee, and General Electric.
Joël Pointon, MPH, lives in San Diego, California, and is a community advocate representing the LGBTQ+ community, a member of the DEI Committee, and monitors the GU committee. Joël is the principal and founder of JRP Charge, which provides consulting services on multi-unit dwelling electric vehicle charging infrastructure challenges, and has spent his career in the environmental health field. He is a prostate cancer survivor and an active contributor to the Health Unlocked community support group communities, including the Advanced Prostate Cancer group and Gay Men with Prostate Cancer group. He has participated in a clinical study of gay men with prostate cancer and treatment 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 presented at the Prostate Cancer Foundation’s 28th Scientific Retreat on “ADT, Resistance Training and QoL” in the Survivorship Module.
Allison Rosen, MS, is the research advocate on SWOG's adolescent and young adult (AYA) cancer committee 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 co-chair of the patient advocate committee and is a member of the SWOG executive advisory committee. She is als 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 gastrointestinal 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. Jonathan is a filmmaker and producer, a patient advocate, and a testicular cancer survivor who recently relocated to Denver, Colorado after 16 years in Santa Monica, California. At Digital Health Networks he oversees original content with particular interests in increasing public awareness of clinical trials, health disparities, and issues pertaining to adolescent and young adults. His advocacy work spans over 10 years and 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 SWOG's 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 tests the effectiveness of infotainment to raise public awareness of cancer 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 and sister of cancer survivors and has many friends and loved ones who have survived their disease.
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 is the chair of the CLL Society's Patient Advisory Board, 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.