Patient Advocacy
Program Overview
Team CANCAN has assembled a team of outstanding scientists, clinicians, and community advocates with diverse backgrounds in cancer research and awareness. They all have unique and complementary skill sets with a broad range of perspectives from the standpoint of cancer survivors, researchers, and proponents of patient care. Our advocates will work alongside the CANCAN scientific team to lead a comprehensive effort to map cachexia’s underlying causes, define distinct subtypes, and help identify new treatments that will move cachexia from the ranks of uncharted territory to the new frontier of modern medicine. The advocates are a core component of Team CANCAN as they will participate in project meetings, events, and activities to give insightful feedback to our investigators from the patient’s perspective.
Patient Resources
Cachexia is a debilitating syndrome characterized by extreme weight loss, including loss of muscle and fat tissue, and appetite that cannot be overcome through nutritional support. As many as eight million people a year globally are impacted by cachexia. While it can occur in multiple diseases, cachexia commonly occurs in patients with advanced cancer, causing a profound impact on quality of life, inability to continue cancer treatment and a poor prognosis. Currently, not much is known about cachexia’s underlying causes and there are currently no effective treatments to block or reverse it.
Through its advocacy efforts, Team CANCAN seeks to promote education and awareness about cancer cachexia among patients, caregivers and healthcare providers. Additionally, we seek to empower those impacted by cachexia with information and resources. On this page, you will find general cancer resources, information about our advocacy team, a glossary of key terms related to cachexia and Team CANCAN’s research, interviews and other media, a list of cancer centers and healthcare providers specializing in cancer cachexia, as well as links to organizations representing the three cancer types we study: colorectal, lung and pancreatic. The patient resource page serves as an informational hub to guide and empower patients living with or at risk for cachexia and to share the latest scientific findings on cachexia from Team CANCAN.
Meet the Advocates
Our advocates will participate in four interactive groups that contribute to the overall team. All of our advocates lead cancer awareness organizations that provide knowledge, education, and patient support to diverse communities. Through their work with Jazz for Prostate Cancer Awareness (Jazz4PCA), LUNGevity, and Crossroads4Hope (A Network of Cancer Support), our advocates provide a strong community framework that will help Team CANCAN project the benefits of their research.
Ralph Stowe
Founder of Jazz For Prostate Cancer Awareness™, a 501(C)3 registered NPO which raises awareness about prostate cancer while raising support for free prostate cancer screenings, using live jazz as the inspirational platform for men’s wellness presentations. Jazz4PCA™ was founded in memory of NYC legendary jazz trombonist James “Jimmy” Stowe, who succumbed to prostate cancer at age 61. Brothers Wendell, Phillip, and Ralph, each, have undergone a successful prostatectomy, from the benefits of early cancer screenings. Jazz4PCA®, in James’ honor and legacy, is in alliance with the jazz community and its notable musicians in raising awareness and support for free prostate cancer screenings; such notable musicians includes: Onaje Allan Gumbs, Tom Browne, Marcus Miller, Wayne Cobham, Chuck McPherson, Najee, Omar Hakim, Eric Benet, Chaka Khan, and many others.
AMY MOORE, PHD
Dr. Amy Moore is a virologist and cancer researcher with over a decade of experience in the nonprofit sector working on unique initiatives to build research capacity and improve cancer outcomes. Before joining LUNGevity, Dr. Moore served at the Go2 Foundation as the Director of Science and Research, where she oversaw the foundation’s portfolio of scientific programs. During her tenure, Dr. Moore facilitated new research initiatives and collaborations and also vetted new technologies and partnerships for Go2 Foundation’s sister organization, the Addario Lung Cancer Medical Institute. She also served as primary liaison with oncogene-driven lung cancer patient groups. With extensive experience in academia, Dr. Moore has published seven peer-reviewed papers, covering topics such as biomarker testing for non–small cell lung cancer and T-cell factors. She received her bachelor's degree in biology from Furman University in Greenville, SC, where she graduated summa cum laude. She obtained her Ph.D. in microbiology and immunology from Wake Forest University School of Medicine in Winston-Salem, NC.
Amy Sutton
Amy Sutton is Chief Executive Officer of Crossroads4Hope, A Network of Cancer Support (CR4H). Since assuming this role in 2012, her focus has been on transforming the organization through innovative approaches that update traditional models of psychosocial support for the realities of today’s complex and costly cancer journey. Her passion for the mission comes through professional and personal experiences seeing the challenges facing patients, caregivers and family members coping with a health crisis. As a result, she is deeply committed to reducing the burden of cancer, especially on the most vulnerable members of our communities.
Yvonne Diaz
Yvonne is the current Chair of ALK+ International and a Member of the Board of ALK Positive Inc. These two charities focus on funding research and advocacy to improve the life expectancies for people living with ALK-positive cancers. Yvonne is also an active member of Lung Cancer Europe and works with other groups to increase awareness around key issues like biomarker testing and quality of life. Yvonne’s advocacy interests are in the areas of clinical research, fast-tracking innovation, and ensuring patients have a voice as equal partners in research. Lastly, Yvonne is interested in collaborating with the research, medical, and patient communities to improve outcomes for those with cancer. Yvonne Diaz’s diagnosis of incurable stage IV, ALK-positive lung cancer in August 2021 prompted her involvement in patient advocacy and cancer research.
Barry D. Stein, B.Com., B.C.L., LL.B.
As the president and CEO of Colorectal Cancer Canada (CCC), Barry actively represents the interests of cancer patients. Barry regularly speaks to medical professionals, industry, government, and patient groups across Canada and internationally about colorectal cancer, pan-cancer issues, and health policy. He regularly participates in research-initiated CIHR-funded projects to ensure patient centricity in cancer trials and translational research. As a strong advocate of cancer research in Canada he is a member of the Canadian Health Research Forum (CHRF) and on the Board of Directors for the Donald Berman Foundation and Tikva Children’s Foundation. As a survivor of metastatic colorectal cancer diagnosed in 1995, Barry was obliged to seek health care outside of Canada to fight his disease. His judgment, obtained in the Superior Court of Quebec in 1999, still serves as a leading precedent in Canada for reimbursement of out-of-country health care. Barry is also a patient advisor of the CRUK Grand Challenge “OPTIMISTICC”, colorectal cancer and microbiome research project and has received several awards including the 2021 CCRA Award Recipient for Exceptional Leadership in Patient Involvement in Cancer Research.
Nicolas Clifford, MS
Nicolas Clifford is a medical and science communications professional at the Pancreatic Cancer Action Network (PanCAN), a nonprofit organization dedicated to improving the lives of everyone impacted by pancreatic cancer. Nicolas writes and reviews internal and patient-facing one-sheets, booklets, and other resources to ensure that complicated medical information is easily understandable to lay audiences. His goal is to make complex medical information accessible and comprehensible, empowering individuals from diagnosis through treatment and beyond. Holding a master's degree in Palliative Care and Thanatology, Nicolas is deeply dedicated to advancing health equity for vulnerable populations facing serious illness. He is particularly focused on ensuring culturally competent communications for LGBTQ+ and BIPOC communities.
Ann Steagall
Ann Fish-Steagall is an oncology nurse with over 20 years of experience specifically in lung cancer and nearly 40 years in oncology overall. During her time as a research nurse at the University of North Carolina at Chapel Hill, she recognized the need for a system that would allow patients to have follow-up visits with all their medical specialists simultaneously. In 1992, she played a key role in establishing the first multidisciplinary clinic for breast cancer at UNC. In 1995, Ann initiated the UNC MTOP program, which became one of the leading thoracic programs in the country. Throughout her career, she has published numerous articles and book chapters on multidisciplinary care and the importance of having a nurse navigator role in patient care. In 2009, Ann left UNC to launch an oncology nurse navigator program for payers at Biologics Specialty Pharmacy in Cary, NC. Over the next 11 years at Biologics, she focused on building programs and care plans to ensure compliance and safety for patients receiving treatment. In October 2023, Ann became the Senior Vice President of Patient Services and Healthcare Delivery at LUNGevity, where she aims to enhance awareness, education, and the implementation of initiatives that improve the lives of those affected by lung cancer.
