JULIA MAUÉS
Diagnosed with breast cancer while pregnant in 2013, Julia delivered a healthy baby boy and found out shortly thereafter that the cancer had already spread to her bones, liver and brain. After many treatment setbacks, her cancer began to respond to treatment. Cancer is an important part of Julia’s life, but it doesn’t define her. Her goal is to make an impact while she is alive in the lives of others dealing with this disease. Despite facing this terrible disease, she has found meaning and purpose in working with patients and researchers.
Julia’s main focus is working with researchers, clinicians and other stakeholders to ensure research is patient-centered, innovative, accessible and inclusive. Together with Christine Hodgdon, Julia co-founded GRASP – Guiding Researchers and Advocates to Scientific Partnerships – an organization that connects and fosters collaborations between researchers and patient advocates. Julia is also committed to help end disparities for patients of color, especially Black women with breast cancer. She’s a founding member of the #InclusionPledge.
WHAT I'M WORKING ON
GRASP
GRASP - Guiding Researchers & Advocates to Scientific Partnerships, empowers empower patients and researchers to exchange ideas and learn from each other. When patient advocates can inform the research process, we can drive more meaningful and fundable research that improves survival outcomes for breast cancer patients.
Link to programPCDI: Patient Centered Dosing Initiative
In 2020 the PCDI launched an MBC Patient Survey to which 1,221 patients responded regarding their treatment-related experiences. In 2021, the PCDI will introduce a similar survey for Medical Oncologists regarding their perspective about the prevalence and severity of MBC patients' treatment-related side effects and the strategies used for alleviating them.
Link to programMBCBrainMets.org
As a one-stop resource hub for breast cancer patients living with brain metastasis, we are committed to sharing cutting-edge information and resources in a simple format. Curated by fellow patients and supported by nonprofit funding, our mission is to connect you to knowledge and support tailored specifically to your needs.
Link to program