Awareness
Advocacy
❊ Our Position
Systems-level change occurs by raising awareness of an issue and by advocating for policies and practices that shape the system. Changing the trajectory of childhood cancer as it exists today requires initiatives that bring the seriousness of childhood cancer to the forefront of our collective consciousness, so society is compelled not to look away, while arming us with the information to demand from our leaders policies that fund research, provide comprehensive support to children in treatment, survivors, and the bereaved, and make care accessible.
❊ Our Work
Wherever possible, we are seeking state proclamations that raise awareness about childhood cancer, especially cancers like DIPG, where survival rates are 0% and little progress has been made in developing treatments to improve outcomes.
To date, we have successfully obtained proclamations for Pediatric Brain Cancer Awareness Month in 2024 and 2025 in Maryland, Virginia, and Georgia.
State Awareness
When advocates in the field alert the childhood cancer community of new opportunities to raise awareness with our federal officials on critical issues impacting pediatric cancer patients, such as funding cuts for research, approvals or changes in approvals to experimental drugs, or other policies that affect access to and quality of care and health outcomes, our organization participates in these opportunities including sign-on letters, public comments, and informing our network about these issues and how to contact their elected officials.
Federal Advocacy
Another powerful tool for raising awareness and engaging in advocacy is simply telling our stories. Our organization is a family-founded non-profit, born out of the loss of our daughter and niece. Unfortunately, her story is not rare; however, it is powerful. We engage in telling her story and the stories of other children and their families battling cancer to help educate others about the impact of childhood cancer on individuals, families, communities, and society, and aspire to carry forth these stories to change the dialogue, policies, and the system.