End Brain Cancer: Making Life-Saving Connections
By funding research and connecting patients with researchers, doctors and clinical trials, End Brain Cancer is hoping that more people will survive the disease.
BY Brielle Urciuoli
PUBLISHED August 17, 2016
Dellann Elliott Mydland wants to take the politics out of brain cancer research, and for a good reason: to produce more survivors of the disease.
For nearly a decade and a half, Mydland, the founder and president of End Brain Cancer, has been working to connect patients, researchers and doctors to advance clinical trials and ensure that patients face the best possible chance of survival. This, she says, is found in clinical trials, not standard treatment.
“The people who are living and who are surviving had a very good neurosurgeon, and also had their tumor tested and were put into clinical trials,” she said in an interview with CURE. “Those are the people who are beating this disease. The people who aren’t offered these things and [are] getting the standard of care aren’t surviving.”
In brain cancer research, Mydland says there are not enough collaborative efforts.
“It’s very territorial, and that stops progress,” she says, noting that the Cancer Moonshot program will hopefully start to eliminate some of these barriers.
Mydland came to understand these barriers more than 15 years ago with the discovery that her husband, Chris, had a brain tumor.
When Chris Elliott was diagnosed with glioblastoma in 2000, he and his wife assumed that the 39-year-old father of two was getting the best possible care available. After all, Mydland says, they were living in the Seattle area with great health care.
But Mydland also soon learned that standard of care for brain cancer does not always give patients the best chance of survival.
Chris Elliott luckily ended up in a study at the Dana-Farber Cancer Institute before he died in 2002. Three weeks before he passed, he made sure that his wife would continue to be proactive in helping people diagnosed with brain cancer.
“At the time, I didn’t know what we were going to do or what our mission was going to be, but I knew that there must be a better way,” Mydland says. Then, she started hearing from people asking for advice on finding the right doctors, researchers and clinical trials for brain cancer.
“I realized that people really need this service, so that’s what we did,” Mydland says.
The Chris Elliott Fund, now named End Brain Cancer, was created to provide educational materials and personalized information packets for patients. End Brain Cancer has also funded monumental research, like a study of a drug combination at Dana-Farber and the Integrated Patient Support Program at the Swedish Neuroscience Institute in Seattle, which was one of the two locations that hosted clinical trials for the Optune (NovoTTF) device.
“If we never did anything else ever again, those research discoveries were still huge,” Mydland says.
But End Brain Cancer did continue to operate and help patients with brain cancer, focusing on clinical trials and research, as well as personalized treatment approaches for people with glioblastoma multiforme.
“We’re really hoping to be an example for other organizations, companies and doctors to work together and really move things forward to better the patient,” Mydland says.