Trailblazers: Josh Newby & Theresa’s Research Foundation
In this episode, Host Martha Carlson interviews Josh Newby, the founder of Theresa’s Research Foundation. Josh has been a leader in the world of metastatic breast cancer advocacy for over a decade, focusing energy on bringing MBC research scientists and patient advocates together in an effort to improve our lives. To paraphrase Josh, researchers need patients and patients need researchers—a synergy he recognized early and brought to the fore of advocacy. This year, Josh and Theresa’s Research Foundation is doubling down on a cure for MBC. In this episode, he talks about the work the Foundation is doing and what “cure” means to him. He also talks about the effects of current federal policy on scientific research and what it may mean for the young MBC investigators he champions. If you are in need of a good person doing good for his community, download and listen to this episode. And don’t forget to check out the episode notes for details on everyone Josh mentions!
Episode Notes
MARP: This is Theresa’s Research Foundations groundbreaking partnership uniting individual breast cancer research advocates with a breast cancer researcher. The long-term goal if these partnerships is to establish relationships that last, allowing the advocates and researchers to work together to improve cancer research focused on metastatic disease. You can learn more about the program and see information about the MARP partners here.
PAVE: This is a collection of video interviews conducted by patient advocates with MBC researchers. They are on the TRF YouTube, but also on the organizations website. You can view them here.
MBC Webinar Series: This is a new project from TRF that seeks to provide empowering knowledge and education on advancing care for people living with MBC. Conducted with its partner Siteman Cancer Center in St. Louis, this webinar series launches April 8, 2025 and is free to attend, register here.
TRF Published Work:
Continuing to Improve the Odds Together: Next Steps for Engaging and Researchers and Advocates - Findings from the 2022 Metastatic Breast Cancer Research Conference
Organizations Mentioned in Episode:
Breast Cancer Research Foundation (BCRF): This nonprofit is a significant player in funding MBC-related research and advancing awareness of MBC in general.
Metastatic Breast Cancer Alliance: This organization works to bring all stakeholders together to improve the lives and outcomes of those living with MBC. Members include nonprofit organizations, such as Living Beyond Breast Cancer and Komen, pharmaceutical and other industry entities, and individual patient advocates.
Metastatic Breast Cancer Network: This organization, which maintains a website but is only active through Share Cancer Support, was the first organization (formed in 2004) in the United States solely focused on people living with MBC. It was volunteer led and responsible for lobbying Congress for the national MBC Awareness Day of October 13. It held national patient conferences, supported research through grants, and worked with other organizations to improve the lives of those living with MBC.
Metastasis Research Society: The MRS mission is to support progressive research on processes fundamental to cancer metastasis and aid the exchange of information between researchers, clinicians, industry, advocates and patients.
Metavivor: This organization was formed by MBC patients in the Maryland area in 2009. It is a major nonprofit funder of MBC-focused research and is involved in lobbying, patient support, and other areas that impact the lives of people living with MBC.
Cancer Centers Mentioned in Episode:
Baylor College of Medicine - Based in Houston, Texas, Baylor’s Lester and Sue Smith Breast Center integrates clinical trials, informatics, technology, and cancer biology for the sole purpose of conquering breast cancer and improving patient care. It is one of the few recipients of the NIH Specialized Program of Research Excellence (SPORE).
Koontz Center for Advanced Breast Cancer - Located in Kansas City, Missouri, Saint Luke's Koontz Center for Advanced Breast Cancer has a singular goal: improving the outcomes and quality of life for women with advanced (metastatic) breast cancer.
Siteman Cancer Center - This NCI- designated cancer center is located in St. Louis and is associated with Washington University.
Researchers Named in Episode:
Bora Lim - Dr. Lim is an expert in rare breast cancer, such as inflammatory breast cancer, and in triple-negative breast cancer. She seeks to better understand and improve outcomes for people with those diagnoses and others. Learn more about what she and her husband are doing to improve lives of those living with MBC here.
C. Kent Osborne - Dr. Osborne was a founder of the San Antonio Breast Cancer Symposium and a clinician andresearcher at Baylor College of Medicine. You can hear more from him about the founding of SABCS at clicking here.
Cynthia Ma, MD, PhD - Dr. Ma is a medical oncologist and scientist at Siteman Cancer Center. You can learn more about her training and published work here. Together with Jason Weber, PhD and Katherine Weilbaecher, MD, Dr. Ma co-leads the Siteman Breast Cancer Research Program.
Danny K. Welch - Dr. Welch is a researcher focused on metastasis who, among other things, founded the Department of Cancer Biology at the University of Kansas Cancer Center. He has been a supporter of TRF’s work for many years. He was a founder of the Metastasis Research Society (MRS), which continues to focus on understanding the mechanisms of metastasis.
Hillary Andrews - Dr. Andrews is the Director of Regulatory and Research Partnerships at Friends of Cancer Research. She has been a leader in the progress toward including patient advocates early and often in the cancer research process. You can learn more about her and her work here.
Isaac Chang - You can learn about Dr. Chang’s lab (and see pictures too) at his University of Texas Southwestern lab website, where he is focused on metastasis.
Jeffrey M. Rosen - Learn more about Dr. Rosen here.
Lillie Shockney - Dr. Shockney is a researcher and voice for improving quality of life for people living with breast cancer. You can learn more about her and her work on her Wikipedia page.
Lise Worthen-Chaudhari - Dr. Worthen-Chaudhari is conducting research on chemotherapy-induced peripheral neuropathy and rhythmic movement. You can learn more about her here.
Marc Hurlbert - You can learn more about this founder of the MBC Alliance and his ongoing efforts to change the picture faced by people living with cancer on his website.
Matthew Ellis - Dr. Ellis was instrumental in the beginning stages of Theresa’s Research Foundation. He currently works in the pharmaceutical industry, though much of his career has been leading the way in MBC research at academic institutions. From his LinkedIn page: “I have also designed and executed a number of Phase 1 to 3 clinical trials, with a heavy emphasis on translational medicine. I was also principal investigator for the Baylor College of Medicine Breast Cancer SPORE, awarded in 2020. The SPORE focuses on new treatments for advanced breast cancer and continues to thrive.”
Minetta Liu - Dr. Liu is the Chief Medical Officer at Natera; she formerly practice oncology and conducted research at the Mayo Clinic in Minnesota. She has been an early and strong proponent of the clinical possibilities of testing via liquid biopsy. Natera is the owner of Signatera. You can read the Natera press release of her appointment here.
Timothy Pluard - Dr. Pluard is a breast cancer specialist and researcher in St, Louis. He is known for his holistic approach and his drive to improve the lives of people living with MBC. You can read more about him here.
Vered Stearns - Dr. Stearns is a leading oncologist and researcher at Weill Cornell Medicine, where she continues to draw attention to better living with cancer. You can read a little about her current work in this article.
Xiang Zhang - Dr. Zhang is focused on metastasis, with an emphasis on bone metastasis, at Baylor College of Medicine, where he is the Director of Lester and Sue Smith Breast Center. Learn about him and his work here.
Patient Advocates Named in Episode:
Katherine O’Brien - Katherine was diagnosed with de novo MBC in 2009 and died from disease progression in 2021 at the age of 55. She was an active and engaging patient advocate, bringing together people from across all demographics to try to change outcomes in her home state of Illinois and nationwide. You can read the Medscape obituary here. You can read a piece of her writing here, sadly still relevant a decade later.
Kelly Shanahan - Kelly is the President of Metavivor and is a vocal advocate for people living with MBC. You can learn more about Kelly in this wonderful Cancer Health article.
Julia Maués - Julia is well-known in the MBC community as a founder of GRASP and PCDI. You can read a brief biography of Julia here.
Sheila Johnson - Sheila was a leader in MBC advocacy, particularly in the area of underrepresented populations and clinical trials. There was a movie made about her life, God’s Grace”, which is available to watch here through the streaming service BET+. At this link, Sheila is interviewed about the movie and her life.
Shirley Mertz - You can learn more about this founder of the MBC Alliance on their website.
Stephanie Walker - Stephanie has served on the Metastatic Breast Cancer Alliance’s Executive Group and is now the organization’s Vice President. She is active with numerous cancer organizations and other local, state, and national groups. You can read more about her here.
Susan Rafte - A Houston-based MBC patient advocate has been active locally and globally, an early voice for patient presence at the oncology table. She was diagnosed in 1994 at age 30 with Stage III breast cancer, shortly after the birth of her daughter. You can watch an interview with her here.
