MARTHA CARLSON
Martha has spent most of her professional life focused on communication, as a writer, editor, and proofreader. Diagnosed with de novo metastatic breast cancer in December 2014 at 50 years old and with three pre-teen and teen children, she turned to writing to help process this sudden change to her present and future. Through those published pieces, she found the world of formal metastatic breast cancer advocacy. In 2017, she was part of Living Beyond Breast Cancer’s Hear My Voice class, returning in 2018 as an HMV mentor. Martha went through Project LEAD with the National Breast Cancer Coalition, has been a patient advocate mentor for GRASP, and has lobbied and reviewed LOIs for Metavivor, among other advocacy activities. She continues to write regularly for Cure magazine as a Voices contributor and has written for other publications and sites about her experience living with metastatic cancer. Among her most beloved invitations-to-write was a request from visual artist Valerie Roybal, for her work titled For-Get-Me-Not. Valerie died of metastatic breast cancer in 2018, before the gallery event showcasing this work, which used images and words to express life with a progressive and sometimes invisible disease.
In addition to her work with the Metastatic Breast Cancer Alliance, Martha is a research partner in funded research and in patient-led research projects. The focus of her advocacy efforts continues to be on communicating with patients, care providers, pharmaceutical companies, and the public about why the patient experience matters and how we can work together to make lives better now and in the future.
WHAT I'M WORKING ON
Patient Centered Dosing Initiative
The PCDI is a patient-led advocacy effort that has impacted how MBC patients, their care teams, researchers, and industry think and TALK about treatment dosing in clinical care and at the various stages of drug development. PCDI has had work presented at the annual ASCO meeting, SABCS, JADPRO, and MASCC and has contributed to conversations on the topic of dosing at the FDA, among other things.
Our MBC Life Podcast
Amplifying voices, sharing realities. This is Our MBC Life. A podcast dedicated to exploring life with metastatic breast cancer from the perspective of us, the people living with this disease and the experts who partner with us to help make our lives better. Brought to you by SHARE Cancer Support, where we believe no one should face MBC alone.
Link to programBECOME
The BECOME (Black Experience of Clinical Trials & Opportunities for Meaningful Engagement) Research Project aims to better represent Blacks and other minorities in cancer research by increasing diversity in access to clinical trials for MBC.
Link to programDance-Based Avenues to Advance Nonpharmacologic Treatment of Chemotherapy Effects (DAANCE)
Martha is working with Lise Worthen-Chaudhari, PhD, a researcher in the Department of Physical Medicine and Rehabilitation at The Ohio State University Wexner Medical Center on her multicenter trial, Dance-Based Avenues to Advance Nonpharmacologic Treatment of Chemotherapy Effects. The goal is to stimulate neurologic recovery through music & exercise after trauma from chemotherapy.
Link to programBreast cancer patient knowledge and behavior across the breast cancer care continuum research
The project aims to capture the lived experiences of breast cancer patients to assess their understanding of their disease and treatment, beginning at diagnosis. With PI Dr. Elizabeth Papautsky and VK Gadi, MD, Martha is hoping to characterize the acquisition of patient knowledge for self-management across breast cancer.
Voices columnist for Cure magazine
Martha contributes to the patient voices section of Cure magazine and Cure online. She writes about her experiences with MBC care, life, and more.
Link to program
