Today Linda Carey and I join the Stage IV Stampede in Washington, DC to join forces and raise our voices for Metastatic Breast Cancer. Linda has been living with metastatic breast cancer for almost ten years. Her ability to show others what thriving, fighting and dealing with this disease in a positive manner inspires my dedication to The Tutu Project.tion to The Tutu Project.
What is Metastatic Breast Cancer?
We encourage our readers to learn more about this disease by reading through these informative social cards and SHARING them. Photo credit (and a huge thank you) for these amazing infographics to Metastatic Breast Cancer Alliance.
Why does Stage IV (Metastatic) Breast Cancer need a stampede?
The organizers of the Stampede, Metavivor.org (a coalition of organizations) is focused on achieving seven specific goals:
- Expand the metastatic cancer research portfolio at the National Institutes of Health (NIH) in Fiscal Year (FY) 2017 & FY 2018 through growth in appropriations and demonstrated congressional interest in controlling and eliminating cancer that has already disseminated (metastasized).
- Ensure the continued growth of the Breast Cancer Research Program (BCRP) within the Congressionally Directed Medical Research Program (CDMRP) at the Department of Defense (DoD) in FY 2017 and FY 2018, and encourage prioritization of research opportunities for already disseminated, metastatic stage IV cancers since eliminating breast cancer through prevention has failed.
- Raise awareness of already disseminated, metastatic, stage IV cancer and the unique needs of affected individuals on Capitol Hill and among the general public and advocate the need for new codes for patients with a diagnosis of already disseminated metastatic cancer so that this population can be correctly counted.
- Support efforts to improve access to quality, affordable healthcare, innovative therapies, and end the waiting period for disability and Medicare benefits for individuals facing terminal illness.
- Cultivate a nationwide network of grassroots advocates who will effectively engage their elected officials to help advance the metastatic cancer agenda.
- Participate in community advocacy efforts focused on improving the drug development pipeline and facilitating treatment development.
- Monitor relevant legislative and public policy issues by participating in coalition advocacy activities and attending events on Capitol Hill.
Metastatic Breast Cancer Resources
In addition to visiting the aforementioned websites, we recommend that women and men with metastatic disease visit Living Beyond Breast Cancer. We absolutely love their program:
We provide programs and services to help people whose lives have been impacted by breast cancer. Our goal is to provide information, community and support that you can trust, is easy for you to access and respectful of you and your situation. All our resources are carefully and frequently reviewed by some of the country’s leading healthcare experts and informed by people living with breast cancer.
Marcela Shine is Founder of Avanzar Ventures, Business Manager of The Tutu Project and an advisor to the Carey Foundation. Her company, Avanzar Ventures, has been supporting the project by providing operational, social media and technical implementation strategy since the inception of the project.