The mission of the Kidney Cancer Program (KCP) Patient Council is to serve as a liaison between the KCP leadership and our community. As an integral component of the KCP, we are poised to shape the future of the KCP and assist the leadership in its mission to provide outstanding and holistic care to patients. Conversely, we seek to improve communication from the KCP to our community and raise awareness about this devastating disease.
My passion is serving as a bridge between the patient and scientific communities. I have become increasingly involved in patient advocacy following my diagnosis with breast cancer in 2004 and subsequent treatment at UT Southwestern, and now my goal is to help patients and those who love them understand all kinds of cancer research, from basic science through clinical treatments.
Educated as a biomedical engineer, I appreciate medical research, and I volunteer as a patient advocate for many different cancers in a number of different capacities, including ECOG-ACRIN, part of the National Cancer Institute (NCI) National Clinical Trials Network, and the Advocate Engagement Working Group for the NCI Council of Research Advocates, the advocate advisory board to the Director of the NCI. For the past five years, I have been the National Patient Advocate for the NCI Physical Sciences-Oncology Centers program, where I directed advocacy activities at all 12 Centers within the network. Recently I became one of four founding editors of a new journal, Convergent Science Physical Oncology, which will include the patient voice in every aspect of the publication and review process.
I am excited by the opportunity to participate as a member of the KCP Patient Council and to work with a dedicated group of researchers, clinicians, and advocates to develop an active and engaged community that will make a significant impact in the lives of those affected by kidney cancer.
For 25 years I worked as a critical care and emergency room nurse caring for critically ill patients. In August of 2012, my world was turned upside down when I was diagnosed with Stage IV kidney cancer. I now found myself a patient.
Through my experience as a cancer patient, I understand the physical, emotional, spiritual, and financial difficulties that my patients encountered. Upon entering UT Southwestern, I have enjoyed the superior care and dedication of the UT staff and doctors. As a former caregiver, I was always committed to the personal care of patients and their families. I would be honored to join in that care. Therefore my hope in volunteering and serving on the KCP Patient Council is that I might offer a word of encouragement, a listening ear, and the comfort of an understanding presence to patients and their families in their journey with cancer.
I am a kidney cancer survivor, not in the literal sense of the term, but I am the widow of a former kidney cancer patient. I bring first-hand knowledge of the challenges cancer presents to patients and caretakers. To make a difficult time in their lives less stressful, I'm interested in volunteering. I want to make my role as a patient advocate a part of my husband’s legacy and I know it would make him happy for me to help others navigate this experience.
Born in England, I served in the Royal Air Force and I have a B.Sc. in electrical/electronic engineering. I have been involved, until recently, in the technical aspects of pilot training.
In 2011, I was diagnosed with large tumors in both kidneys which were later identified as clear cell renal cell carcinoma – kidney cancer. Due to the risk of being on dialysis, I forewent surgery and chose the option of treating my cancer with medication, which I now continue for the stage IV disease. Since starting treatment some three years ago, I have developed a desire to become more involved and do what I can to make a difference for those who have to tread the same path as myself. Consequently, I was excited to accept the role of patient advocate.
Hopefully, my personal experience and the research knowledge that I will gain can be channeled to our kidney cancer community so we have a better understanding of the 'state of play' with regard to research and treatment options.
Often patients benefit from having someone outside of their immediate family who has walked before them and understands the fear and trepidation that having cancer imparts. This sentiment inspired me to volunteer and as a result, we have started a patient volunteer program.
Knowing that I have cancer is difficult for me, but participating in the volunteer program and as a patient councilor gives me an opportunity to be a part of something that can affect my future and the future of other kidney cancer patients in our community and I'm excited about it.
Raised in the Dallas area, I have often heard of the outstanding reputation UT Southwestern has in regards to medical research, but since my husband was diagnosed with kidney cancer, I have learned just how exceptional they are! I can't emphasize enough what a relief it is for us, and how fortunate we are, to have such a knowledgeable, compassionate, and dedicated kidney cancer team overseeing his care! When a loved one is found to have cancer, it is a very scary life-changing experience filled with many unknowns. Our personal cancer journey and the commitment of this program has inspired my desire to volunteer. As a patient advocate and member of the Kidney Cancer Program Patient Council, I wish to offer comfort, support, and encouragement to patients and their families dealing with this disease and to assure them that they are not fighting alone.
Patient Council Vision
- Assist kidney cancer patients in their needs and guide them through their treatment
- Provide emotional support where appropriate
- Orchestrate and coordinate volunteer efforts with patient needs
- Connect patients to support services including educational resources and support groups available at UT Southwestern
- Raise awareness about kidney cancer in our community
- Foster the lay dissemination of advances in kidney cancer
- Develop educational programs
- Advocate for research support
- Identify and prioritize areas of improvement
- Serve as a vehicle for patient concerns to the KCP leadership
- Act as agents of change to help implement patient suggestions
- Promote engagement of our community
- Consider and support initiatives by members of our community
- Organize fundraising and other events