The MBC Alliance is honored to have served as a catalyst and partner in the creation and launch of a new website, MBCBrainMets.org.
As the first one-stop resource hub for breast cancer patients living with brain metastasis or leptomeningeal disease, the new site was curated by fellow patients and supported by funding from nonprofit Alliance member SHARE Cancer Support. By sharing cutting-edge information and resources in a simple format, the site connects people living with brain metastasis to knowledge and support tailored specifically to their needs.
Created by patient advocates to fill an unmet need
MBCBrainMets.org was created by advocates living with metastatic breast cancer, including numerous Alliance members, who recognized the unmet needs of breast cancer patients with central nervous system (CNS) metastasis. Previously, people living with CNS metastasis lacked a single central source for comprehensive information about diagnosis, treatments, management, and survivorship.
Now, through this online resource hub, users can access information to understand brain metastasis or leptomeningeal disease, from the basics of the diagnosis to treatment options for specific subtypes. They can also search for current clinical trials, explore a directory of experts to seek a second opinion, and find hope and advice from fellow patients.
While the website was created by patients, its content has been reviewed by a medical advisory board of world renowned experts in the field of medical oncology, neuro-oncology, radiation oncology, surgery, and cancer research. Other contributors and reviewers include patients living with brain metastasis or leptomeningeal disease as well as allies to those patients, and representatives from nonprofit organizations.
The idea for the website was born from an MBC Alliance project called the Breast Cancer Brain Metastasis (BCBM) Initiative: Marina Kaplan Project. The Marina Kaplan Project aims to identify and address gaps in BCBM research, from basic science to clinical trials. It is named in memory of Marina Kaplan, an Alliance member who was a brilliant epidemiologist and powerful advocate. Diagnosed with metastatic triple negative breast cancer, Marina developed brain metastasis in the last year of her life and died on January 13, 2020.
MBCBrainMets.org is dedicated to her and to all breast cancer patients living with brain metastasis, as well as those who have lost their lives to metastatic breast cancer.
Help make a difference for people living with brain metastasis or leptomeningeal disease! Share the new website with your network to spread the word about this powerful new resource.