Brain cancer patient-researchers featured in Cancer Health magazine

Brain Cancer Quality of Life Collaborative patient stakeholders, Liz Salmi and Adam Hayden, were featured in Cancer Health magazine for their work in this collaborative. Check out a preview of this story, and read the full article at


Liz Salmi and Adam Hayden found each other on Twitter and bonded over the fact that both had been in punk rock bands and both had been diagnosed with brain cancer.

On Facebook, biochemist Corrie Painter met an instant friend who had been diagnosed with rare angiosarcoma of the breast—just like her.

And over drinks at a national summit for cancer survivors, former rocket scientist Janet Freeman-Daily connected with four other lung cancer patients who shared the same uncommon tumor gene mutation.

Finding others who share a specific diagnosis can be an invaluable source of support and information. Beyond that, these allies went on to launch ambitious efforts that could help reshape the future of cancer research.

Patient-led research is growing in both size and sophistication. What’s more, these projects are attracting the attention of academic institutions and funding agencies with their focus on largely unaddressed scientific questions and unmet medical needs.

Diving into the research was “so scary but also so exciting,” says Salmi, who helped start a project that could lead to better care for people with brain cancer.