PS-ON Patient Advocacy

The National Cancer Institute (NCI) Physical Sciences – Oncology Network (PS-ON) Patient Advocacy Program is a collaborative effort between members of the PS-ON and advocate advisors serving as liaisons between the patients and the scientific community. Advocates aim to break down programmatic silos by identifying common themes, thorny issues, capacity building strategies, metrics and measurements and new engagement models. In 2017, the NCI formed the PS-ON Patient Advocacy Working Group which convenes bi-monthly via teleconference to discuss the ongoing activities of the patient advocates as well as approaches to engage new advocates and educate students and researchers about advocacy.

PS-ON Patient Advocates

Carole Baas, Ph.D.
National Patient Advocate - Physical Sciences - Oncology Network

Dr. Carole Baas is the PS-ON National Patient Advocate for the NCI PS-ON. Drawing upon her background in research and academia as well as from her personal experience with cancer—Dr. Baas has a Ph.D. in Biomedical Engineering from Texas A&M University and is a breast cancer survivor—she serves in a volunteer capacity as a liaison between the scientists and the cancer patient community. Her role is to represent the patient perspective, encourage advocacy involvement within the PS-ON and promote the dissemination of research findings to the public.

Prior to her involvement in patient advocacy, Dr. Baas was a medical researcher studying high altitude physiology for the United States Air Force (USAF) and NASA. Her doctoral research focused on the development of a mathematical model of a physiologic system: the flow of cerebrospinal fluid in the treatment of hydrocephalus.

Bob Riter, M.H.S.A.
Cornell University Physical Sciences - Oncology Center
http://blogs.cornell.edu/cancercommunitypartnership/

Bob serves as the link between the PS-ON Center at Cornell University and cancer patients/survivors in the local community. He recruits and organizes panel presentations by patients/survivors for Cornell classes, provides the patient/survivor voice within the Center, and helps teach classes that are designed to connect cancer researchers and trainees with cancer patient/survivors.

Jeri Francoeur, M.S.
Moffitt Cancer Center Physical Sciences - Oncology Center
http://psoc.moffitt.org/education/

Jeri is the lead advocate for the PS-ON Center at the Moffitt Cancer Center and participates in all their outreach programs, judges their research competitions, speaks at conferences for them, disseminates information to lay public, is involved in high school research program, and sits on numerous research committees for Moffitt, as well as attends Lobby Day to request research funding.

Stuart Cornew, M.B.A
Northwestern University Physical Sciences - Oncology Center
https://www.psoc.northwestern.edu/education-outreach/

Stuart Cornew is affiliated with Northwestern University. His primary role is member of the Executive Advisory Board of the Chemistry of Life Processes Institute.

Susan Samson, M.P.H.
University of California, Berkeley Physical Sciences - Oncology Project
http://cancer.ucsf.edu/research/programs/breast/breast-science-advocacy-core

Susan Samson serves as a seasoned research advocate to 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). Notwithstanding involvements in novel physical sciences and oncology mechanobiology research at program inception, Susan's other areas of oncology interest include: Triple Negative Breast Cancer (TNBC) disparities research; as well as HER2 breast cancer models of causation and treatment.

Susan currently serves as the advocate on the UCSF Breast Oncology Site Committee, which aims to integrate the science of advocate input in clinical trial development. In addition, she has reviewed grants for Komen, CBCRP, Avon, and SPORE programs and has served as a vital catalyst for transdisciplinary innovation as an advocate co-investigator/adviser on eleven breast cancer funded grants. Moreover, Susan has a notable record of presentations and peer reviewed publications.

Anne Meyn, M.Ed.
The Houston Methodist Research Institute Physical Sciences - Oncology Center
http://cito-psoc.org/education/patient-advocates/

Anne was diagnosed with invasive ductal carcinoma and treated late in 1989-1990 completing surgery, chemotherapy, FAC and a clinical trial, reconstruction, and radiation. Realizing the importance and strength of sharing and knowledge, she began her active advocacy in various arenas including a breast cancer support group, ACS Reach-to-Recovery, longtime volunteer and board member with Susan G. Komen Houston Affiliate. Since her retirement from a career in education, she has become more involved with patient advocacy research programs. She has been a patient advocate for the UT MD Anderson Cancer Center (MDACC) Breast Cancer SPORE. Currently she represents MDACC as the patient advocate for the Translational Breast Cancer Research Coalition (TBCRC) where she was recently selected as co-chair of the Patient Advocate Working Group. Since 2008 Anne participates in several patient advocate roles at the Houston Methodist Research Institute including serving as a patient advocate for DoD Innovator Award, DoD Breakthru Level IV, the Data Safety Monitoring Board, and the NCI PS-ON. Anne co-chairs the Komen Advocates in Science (AIS) Steering Committee, thus a Komen Scholar. Anne enjoys working frequently with various scientists as a patient advocate on many within the Texas Medical Center.

Anne expresses: I am inspired by my fellow survivors and the amazing patient advocates with whom I work. There has never been a time in my life when I did not value research, having been surrounded by scientists, both my parents and my late husband. Intellectual curiosity and the constant quest for medical cures continue to encourage me. We are all still on that quest.

Ashley Dedmon, M.P.H.
The Houston Methodist Research Institute Physical Sciences - Oncology Center
http://cito-psoc.org/education/patient-advocates/

Ashley is currently a public health professional, a cancer advocate, and public speaker. As a young woman, Ashley lost her mother to stage IV metastatic breast cancer and watched her father battle prostate cancer. With a family history that includes three generations of women affected by breast cancer, Ashley decided to undergo genetic testing and discovered she was BRCA 2 positive, a leading marker for the disease.  She is a BRCA2+ patient speaker with Myriad Genetics and patient advocate with Houston Methodist Research Institute: The Center for Immunotherapeutic Transport Oncophysics (CITO), a member of the Physical Sciences-Oncology Network (PS-ON), and serves on a myriad of breast cancer workgroups and committees. She actively volunteers with Susan G. Komen, Facing Our Risk of Cancer Empowered (FORCE), as a peer navigator, an Ambassador for Got Boobs?, and Ovacome Inc. She serves on the health and wellness committee at her church, The Fountain of Praise, and is a member of the Missouri City-Sugarland Chapter of Jack and Jill of America Inc.

Ashley recently presented a TEDx talk on the "The Generational Impact of Cancer: BRCA2 Positive" and can be viewed here.

Stavroula Sofou, Ph.D.
Johns Hopkins University Physical Sciences - Oncology Center
https://engineering.jhu.edu/chembe/faculty/stavroula-sofou/

Stavroula Sofou, PhD., is Associate Professor in the Department of Chemical and Biomolecular Engineering and Associate Researcher at the Institute for NanoBioTechnology at Johns Hopkins University (JHU). She serves as JHU PS-OC patient advocate since January 2019. Her research interests range from lipid biophysics with emphasis on lipid phase transitions, to engineering of environmentally-responsive hierarchical lipid assemblies with tunable functionalities, to nanoparticle-mediated delivery of chemotherapeutics and alpha-particle emitters with a twist in targeting and transport.

Valencia Robinson, Ed.S.
Moffitt Cancer Center Physical Sciences-Oncology Center
http://psoc.moffitt.org/education/

Since the day of her diagnosis of triple negative breast cancer at the age of 33, Valencia has been committed to serving the community in an effort to raise awareness of breast disease. She has attended Project Lead, the San Antonio Breast Symposium and AACR. She is a board member for the Florida Breast Cancer Foundation, Triple Negative Breast Cancer Clinical Study Patient Advisory Board, reviewer for the DOD BCRP, an advocate with the patient led group The Light Collective, a member of the Physical Sciences Oncology Education and Outreach Group and the Oncology Nursing Society. She is also an editor for the Molecular Biophysics and Biochemistry department at Yale University. Her passion to help patients and survivors of cancer (especially breast cancer) in all areas – legislation, research, and therapeutics, and overall wellbeing as a patient advocate, shines through all the work that she continues to do.