Meet some of the I-SPY 2 Breast Cancer Patient and Research Advocates who are advisors for the trial. They provide the patient’s perspective to the I-SPY 2 Trial team to assure a positive experience for participants on the trial.
You can download and read this article published in the European Society of Medicine’s journal about how the advocates help keep the I-SPY Trial patient-centered.
For more information about I-SPY 2 advocacy please contact Info.advocates@quantumleaphealth.org .
Susie Brain is a breast cancer survivor and a dedicated patient advocate. Over the past 15 years she has worked with both local and national advocacy organizations and serves on several research and survivorship committees involving government, academic, and non-profit organizations. She is an informed and well-trained research advocate having graduated from the National Breast Cancer Coalition’s cancer science training program “Project LEAD Institute”, and their advanced courses: “Clinical Trials Project LEAD” and “Quality Care Project LEAD”. She has served as a Stakeholder Reviewer for the American Cancer Society, as a Consumer Grant Reviewer for the DOD Breast Cancer Research Program, as Komen “Advocate in Science” reviewing grants for Susan G. Komen for the Cure®, and as an Advocate Observer for the California Breast Cancer Research Program. She has been a research advocate with the UCSF Breast Science Advocacy Core (formally SPORE) since 2009.
In 2008, Thelma Brown was diagnosed with breast cancer and in 2014 she was diagnosed with a recurrence. Her relationship with breast cancer, however, began much earlier than that because additionally, her mother and five of her sisters also had breast cancer. Having lost two sisters to Her2+ breast cancer, and another to a myelodysplastic syndrome, secondary to breast cancer treatment, she is deeply committed to supporting research that will lead to better understanding of this disease, as well as more effective and less toxic treatments. Thelma’s analytical skills, which were honed by her formal education in engineering, her keen interest in the sciences, as well as her perspective of that of a survivor and co- survivor, is a unique, but perfect fit for patient and research advocacy.
Coleen Crespo is an eleven-year breast cancer survivor. She has 30 years of scientific research experience, fifteen of which are as Lead Clinical Data Manager at Duke Clinical Research Institute (DCRI), a position she currently holds. Her professional clinical trials experience is in oncology, heart, liver and ophthalmology.
Amy L. Delson is an active research advocate and two-time (2000, 2019) breast cancer survivor with a family history of mid-life, intergenerational DCIS, IDC, and MBC. A licensed architect, she founded Strategic Facilities Planning in 1996 to provide design services for science, education and patient care projects. Her practice has focused on laboratory and strategic planning for clinical medicine, pathology, and translational research to academic and community health care systems such as UCSF, Stanford, UCLA, UCI, Kaiser, VA, Providence, Sutter, PPH, and John Wayne Cancer Institute.
Peggy Devine is a Medical Technologist and holds a Bachelor of Science in chemistry and biological science and an MT or Medical Technologist (American Society of Clinical Pathology) license. She has worked in both clinical and research laboratories for over 25 years. She retired from that work after her breast cancer diagnosis in 1994 and served as an Assistant Administrator of the Breast Oncology Program at UCSF to learn the world of breast cancer research from the inside. During that period, she became the Advocate Manager of the I-SPY 1 Trial, bringing the patient experience to the table and designing patient-centered educational materials for the trial.www.CISNcancer.org
Sandra (Sandy) Finestone, is a 30-year breast cancer survivor and research advocate who has been a volunteer for Susan G. Komen for over 25 years. Sandy serves on the Advocates in Science (AIS) Steering Committee and as the advocate representative on the Komen Scientific Advisory Board.
Pat Haugen is a 23-year survivor of inflammatory breast cancer. She has experience as a Department of Defense Breast Cancer Research Program consumer peer reviewer, Integration Panel member, and Chair, as well as a consumer reviewer for the California Breast Cancer Research Program and for the American Cancer Society. She serves on a community Institutional Review Board (IRB) and on the PRIME IRB and served as a member of the National Cancer Institute’s Adult Central IRB – Early Phase and Late Phase Boards and has served on National Quality Forum Steering Committees. She participated in the National Breast Cancer Coalition (NBCC) Quality Care – Measuring What Matters Project and also served as the consumer representative to the Advisory Board of the Consumer Operated and Oriented Plan (CO-OP) Program, part of the Affordable Care Act. She represented the breast cancer advocacy community at the Accelerating Anticancer Agent Development and Validation Workshop, serving on the Program Committee for four years. She also has experience as a public policy and Mayo Breast Cancer and Ovarian Cancer SPORE advocate and serves as a Patient Investigator on a PCORI grant to improve hypertension control and as an advocate on several other breast cancer research projects.
Diane Heditsian’s work as a patient, policy and research breast cancer advocate is informed and driven by her experiences as a four-time breast cancer patient and survivor. As an engaged advocate of eighteen years, she works to educate and empower women to advocate for their own health and healthcare, with the goal to improve health outcomes equitably. Working with clinicians, researchers and legislators, she advances quality of care, participation in clinical trials, and medical science discovery.
Marisa Leonardelli was diagnosed with breast cancer at the age of 35. Being younger at diagnosis propelled her to become involved in advocacy and spreading awareness to other young women.
When Barbara LeStage was fifteen, her mother who was forty-one years old, she died of pancreatic cancer. In the 1970s her father was diagnosed with spindle cell carcinoma of the face requiring extensive surgery and radiation.
Bev Parker is a long-term, three-time breast cancer survivor and advocate. Her experiences have involved education, career, and volunteer activities. She earned graduate degrees in business (MBA) and social work (MSW), focusing on cancer whenever possible. She then earned a PhD in public health, conducting a qualitative study of male breast cancer as her dissertation research.
Jane Perlmutter, Jane Perlmutter is a long-term cancer survivor and active advocate. While her advocacy is largely rooted in her own experiences, it is also informed by her formal training in cognitive psychology and experimental methods (Ph.D.), computer and information science (MS) and business (MBA), as well as her career experiences which included many years in academia, not-for-profit R&D, corporate senior management and independent consulting.
Susan Samson serves as a seasoned research advocate for the University of California, San Francisco (UCSF) Breast Oncology and PS-ON Programs. She brings an extensive background in epidemiology research, clinical trials administration, cGMP standards, and FDA regulatory requirements, supported by masters-level training in public health (MPH).
Carol Simmons has been an advocate in the UCSF BSAC program since 2010. A 13-year breast cancer survivor, she attended Project LEAD in 2013 and has attended SABCS twice, as well as participating regularly in the UCSF Breast Oncology Annual Retreat. She is also a Komen advocate and attended the Lynn Sage Breast Cancer Symposium in 2019.
Joan Venticinque, a two-time breast cancer survivor, has over 14 years of experience advocating for cancer patients and their families. Joan has been a member of the Breast Science Advocacy Core (BSAC) with the UCSF Breast Oncology Program since 2009. Her past work with the Cancer Supportive Care Program at Stanford and with Bay Area Cancer Connections in Palo Alto informs her collective understanding of the concerns that survivors, patients, family members, and persons affected by cancer face.
