CPAT Steering Committee
Warner Robins, GA
Rachel Ferraris is a 10-year breast cancer survivor who was diagnosed when she was 35 years old. Being so young, her concerns were dismissed by her first doctor, but she knew something wasn’t right and sought a second opinion. What was “nothing” was diagnosed a few weeks later as stage 3 invasive ductal carcinoma. While in treatment, Rachel told her story to others and encouraged them to be self-advocates and to not be afraid to ask questions concerning their own health and treatments. After active treatment she attended her first lobby day with Susan G Komen for the Cure, where she quickly discovered her passion of being a voice for equal treatment and access to screening for all. In 2007, Rachel created and served as Public Policy Chair for Susan G. Komen Central Georgia. She also served as co-chair and fundraising chair for Race for the Cure. She has been a consumer reviewer on several Congressionally Directed Medical Research Program (CDMRP) panels and for Advocates in Science with Komen.
Rachel recently completed a 2-year term as a State Leader with the Young Survivor Coalition, where she represented Middle Georgia breast cancer patients who were diagnosed under 40 years old. She actively oversees a virtual support group using social media. In 2016, Rachel joined the NCCS CPAT team and has been successful in reaching out to local media and community groups sharing the importance of cancer care planning.
Rachel lives in Warner Robins, Georgia with her husband and their two sons. She is the Family Engagement Coordinator at Parkwood Elementary School.
San Francisco, CA
Diane’s volunteer cancer advocacy work is informed by her two breast cancer diagnoses and includes both research and patient advocacy that spans thirteen years. She has held leadership roles in local and national advocacy organizations and is a sought-after speaker for clinician, researcher, patient, and payer audiences. Most recently she presented an advocate’s prescription for survivorship care at the American Society for Clinical Oncology’s inaugural Cancer Survivorship Symposium.
In 2009, Diane joined the University of California, San Francisco, Breast Oncology Program’s SPORE (now Breast Science Advocacy Core) to work with researchers to help bring their breast cancer science focused on diagnosis and treatment to the clinic. At UCSF, she is a research advocate for three large clinical trials, including one that compares personalized risk-based breast cancer screening with annual screening. The trial was one of the first supported by PCORI (Patient-Centered Outcomes Research Institute) through its Pragmatic Clinical Trials Initiative.
Diane has co-created and presents an educational seminar for principal investigators on how to optimize the advocate-researcher relationship. An electronic Advocacy Toolkit accompanies the seminar. As a National Breast Cancer Coalition Project LEAD and Research Advocacy Network-trained science advocate, Diane is a consumer reviewer for the Department of Defense Congressionally Directed Breast Cancer Research Program; she also reviews grants for Susan G. Komen. Diane has co-chaired an ERA of HOPE Conference symposium.
She has long served as a peer counselor and currently works with Living Beyond Breast Cancer to help women at all stages of breast cancer with their journey. Diane is pleased to bring her mix of skills to the steering committee of the Cancer Policy & Advocacy Team (CPAT).
Diane is the founder and CEO of deClarity, a global life science communications consultancy. She is a Phi Beta Kappa graduate of Tufts University, lives in the San Francisco Bay Area, and has two grown children.
Lee Jones, MBA
Lee Jones, MBA, is the 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 (PCORI). Lee is a member of the workgroup that is writing the next five-year Virginia Cancer Plan, and volunteers as a research advocate with Fight Colorectal Cancer.
San Diego, CA
Like so many other 27-year-olds, Jamie had plans for her life. Breast cancer changed those plans overnight. Fourteen weeks into her pregnancy, she discovered a lump in her breast and was diagnosed as a BRCA carrier with triple-negative breast cancer. She had six months of chemotherapy while pregnant before delivering a healthy baby boy.
Professionally, Jamie is an attorney with more than a dozen years of experience practicing both civil and criminal law and working on health policy matters at the national, state, and local levels. She is currently a Chief Deputy City Attorney for the City of San Diego where she is charged with leading the Neighborhood Prosecution and Collaborative Courts Units.
Previously, Jamie served as a cancer-rights attorney where she successfully forged relationships with, and provided cancer-related legal information to, cancer organizations, hospitals, law firms, other community partners, and members of underserved communities. Over the past ten years, Jamie has provided countless educational seminars discussing cancer-related legal issues to survivors, health care professionals, advocates, and the general public. She has been published in a variety of publications, such as California Lawyer and SHAPE magazine, and has been featured on dozens of community television and radio shows. Additionally, Ms. Ledezma has served as an Adjunct Professor at Fresno State and Fresno City College where she has taught political science courses.
Jamie currently serves on the California Breast and Cervical Cancer Advisory Council, the Advisory Council for Pink Power Moms™, and on the board of directors for the Get In Touch Foundation. As a working professional and young breast-cancer survivor with a growing family, Jamie is proud to serve on the Cancer Policy & Advocacy Team (CPAT) Steering Committee for the National Coalition for Cancer Survivorship to advocate for the needs of all individuals touched by cancer.
Susan Leigh, BSN, RN
After receiving her degree in nursing from the University of Arizona in Tucson, Susan Leigh served as a Lieutenant in the U.S. Army and completed a tour of duty in the Mekong Delta, Vietnam, in 1971. Soon after her return from Vietnam, she was diagnosed with Hodgkin lymphoma and was treated with some of the earliest forms of chemotherapy and radiation. This experience influenced her decision to become an oncology nurse.
For the past three decades, Susan has focused her efforts on national advocacy work with special emphasis on long-term and late effects of cancer treatment. Her most cherished involvement has been with the National Coalition for Cancer Survivorship (NCCS) as a founding member and past president and now as a member of the steering committee for the Cancer Policy & Advocacy Team (CPAT). She has also been actively involved with many professional organizations, including the Oncology Nursing Society and the National Cancer Institute.
Since 2010, Susan has been working as a survivorship consultant and educator with Arizona Oncology in Tucson. Besides surviving Hodgkin lymphoma, she has also been treated for breast and bladder cancers and is currently dealing with major treatment-related cardiac issues.
Martin Townsend is a 26-year-old human and 7-year survivor of Biphenotypic Leukemia. Young adulthood is a time of life considered by most to be their prime. However, living in the “prime” of one’s life with a mortal diagnosis is a unique perspective to have in developing meaning and purpose. After his diagnosis in 2011, Martin’s life was uprooted from a nonchalant focus on studies, changing gears to a 7-year intimate journey of asking questions such as, “Who am I?” and “What do I really care about?” These questions carried a weight that catalyzed revitalization for Martin. Life became more so about the process of organically living and discovering life passionately, living and sharing positively without the fear of reproach. He lives now with a spice for connecting to other humans and survivors in intimately creative ways.
In 2016, Martin’s vision of #CoalesceBham began to take shape. He had his first experiences with creative advocacy, participating and learning with the American Association of Cancer Research through the Scientist-Survivor program. 2016 also marked the inaugural meeting of #Coalesce, a group devoted to catalyzing inspired and creative living within the local Birmingham survivorship population. Martin realized that the freedom of creative expression emancipated him from the fears of life as a result of his diagnosis. Connecting to people through shared artistic mediums such as song, dance, storytelling, and visual arts, can cathartically unite and help us all to heal as a human survivorship community. Today, Martin uses his own personal journey of healing and conquering the fears of survivorship to #Coalesce and advocate for cancer survivors all over the world to live their best lives.
New York, NY
At the age of 38, Desirée was diagnosed with breast cancer, which recurred at 47. Desirée serves as an advocate for patients by openly speaking about her diagnosis to audiences nationally. The core of her message is to encourage patients to truly know their body and to feel empowered to steward self, mind, body, and soul.
Extremely active in the cancer community, Desirée, through SHARE’s Side by Side Program, trains medical students and doctors on how to deliver disappointing news and passionately supports the importance of patient-doctor communication. In addition, she volunteers with the Witness Project® of Harlem, Survivors in Spirit (SiS), and, as a board member, Young Survival Coalition (YSC). She is also a member of the Tisch Cancer Institute Advocacy Group, the Center for Disease Control and Prevention’s Advisory Committee on Breast Cancer in Young Women, and National Coalition for Cancer Survivorship’s CPAT Steering Committee. Desirée has given countless talks, including “Spirituality and Cancer” at CancerCare’s “Living with Cancer” conference, and has served as a panelist at the C4YW conference, Congresswomen Wasserman Schultz’s “Beating Breast Cancer EARLY” event, and at a discussion on The Double XX Files hosted by The Norman Lear Center’s Hollywood, Health & Society program and the Writers Guild of America, East. She is featured in the SiS DVD Living, Loving & Learning about African American women and breast cancer survivorship and has frequently appeared in the media. Desirée has also presented on Advocates Mentoring Advocates at the Breast Cancer and the Environment Research Program (BCERP). She facilitates a support group for women of African, African-American and Caribbean heritage who are dealing with breast and ovarian cancers. Desiree has been a guest blogger for ASCO’s Cancer.Net and the Department of Defense’s Breast Cancer Research Program.
Desirée is a member of the National Breast Cancer Coalition (NBCC), and a graduate of its Project LEAD. As a patient advocate, she’s attended many scientific meetings such as the American Association for Cancer Research’s Scientist-Survivor Program and the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved, Desirée is a consumer reviewer for the Department of Defense’s Congressionally Directed Medical Research Program and a patient/stakeholder reviewer for Patient-Centered Outcomes Research Institute.
SHARE, Sisters’ Journey, The Keep A Breast Foundation, and YSC have recognized Desirée as a breast cancer survivor and honored her for her outstanding work as a volunteer, community leader, and educator. Desirée is the recipient of NBCC’s Grassroots Advocacy Award, African Women Cancer Awareness Association’s Torch Bearer Award, and the NAACP Parkchester Branch’s Woman of the Year Award.
Desirée’s diagnosis has created many opportunities as a breast cancer victor to share her talents and to aid diverse communities. It has provided her with a platform to be a voice for the voiceless through advocacy and to pay forward by educating and empowering people nationally. Most importantly, she makes time to “smell the roses” and enjoys spending time with family and friends, baking gourmet bread pudding, traveling, concerts, cultural programs, and sporting events.
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