The Metastatic Breast Cancer Collateral Damage Project has officially launched, and we are now 24 hours into collecting answers to our initial survey! If you are living with metastatic breast cancer (MBC), please participate in this survey – it shouldn’t take you more than about 15 minutes. If you know someone with MBC, please forward this and ask them to participate. The survey is a critical first step in documenting the full extent of collateral damage caused by the disease or its treatment. The long-term goal is to develop a set of recommendations that will improve the quality of life for people living with MBC.
This is an important project for the Foundation, and you can expect regular updates about it in the future. If you’d like more information about this project or any of our other research projects, feel free to send me an email. You can also learn more about the project here
Another noteworthy endeavor is Vice President Joe Biden’s National Cancer Moonshot Initiative. Lately, a lot of talk about it has emerged in the media, online, and throughout various social channels. As a member of the NCI’s National Council of Research Advocates (NCRA), I have the privilege of hearing the updates firsthand from Dr. Douglas R. Lowy, acting director of NCI, along with the initiative’s Blue Ribbon Panel co-chairs, Drs. Dinah Singer and Elizabeth Jaffee. And the chair of the NCRA, David Arons, has been appointed to the Blue Ribbon Panel as a patient advocate.
The NCI’s role in the Moonshot Initiative is significant. They are charged with creating the structure of the program and ensuring that the focus is on research that will accelerate advances in the prevention, diagnosis, and treatment of cancer. And, unlike past initiatives, with this one they are actively seeking community input. One of the core principles of Dr. Susan Love Foundation for Breast Cancer Research is engaging the public in the scientific process. We not only engage advocates in all of our research, but we also serve as advocates. In fact, Dr. Love has recently been actively engaged as a patient advocate with the Leukemia and Lymphoma Society to ensure that they, too, keep the patient perspective at the forefront of their work.
As part of the Moonshot Initiative, the NCI has launched an online engagement platform to enable the research community and the public to submit research ideas to the Blue Ribbon Panel. Community input is an important component of the effort, and members of the scientific community and the general public are encouraged to submit their scientific ideas online here. You can also comment on the ideas submitted by others.
I encourage our vibrant, committed, and well-informed community to get involved. If you have an idea for a research concept but don’t know how to get it started, this is your chance. Remember – this is scientific research, so you have to be able to identify the problem at hand and then explain how your idea will solve it. The deadline is July 1 to post or comment on an idea.
Last week, the NCI announced the formation of seven working groups to evaluate and address the ideas and suggestions submitted by the public: Expanding Clinical Trials, Enhanced Data Sharing, Cancer Immunology and Prevention, Implementation Sciences, Pediatric Cancer, Precision Prevention and Early Detection, and Tumor Evolution and Progression.
The White House also recently launched a hub for sharing information about the Moonshot Initiative, and on this site they’re collecting personal stories. I can think of no better way to convey the importance of moving this project from concept to implementation of research than to personify it with the names, faces, and stories of patients and their families. Everyone has a story; share yours here
I also welcome you to share your thoughts with me, and I’ll do my best to convey them on your behalf. The role of the NCRA is to provide advocate feedback and input to the leadership of the NCI. They can’t always act on every suggestion we bring to them, but they do listen to us and value our input.
What excites me the most about the National Cancer Moonshot Initiative is the encouragement of collaboration. We at Dr. Susan Love Foundation for Breast Cancer Research well know the power of looking at problems from multiple sides and bringing together the strongest teams. I look forward to seeing the impact that the Moonshot Initiative will have on advancing research.