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After her diagnosis of glioblastoma in 2016, she founded an organization that advocated for patients and research.
Jessica Morris, who turned her experience with glioblastoma, a deadly brain cancer, into a crusade for more research and a patient-directed approach to treatment, founding the organization Our Brain Bank, died of complications of the disease on Tuesday at her home in Park Slope, Brooklyn. She was 57.
Her husband, Ed Pilkington, a reporter for The Guardian, announced her death to friends and supporters by email, expressing hope that the organization she started “would help keep her flame and this fight alive.”
In an opinion essay in The New York Times in 2017, Ms. Morris described a fateful day in January 2016.
“I was hiking in upstate New York when I started to feel inexplicably odd,” she wrote. “I wanted to alert my companions that something was wrong, but there was a disconnect between the desire to speak and my ability to do so. Then my eyelids closed and that was that: a full-blown seizure, followed by an ambulance ride off the mountain, and brain surgery two days later.”
Glioblastoma is a particularly aggressive type of brain tumor that seems to defy treatment. It is what killed President Biden’s son Beau in 2015 and Senator John McCain in 2017.
“Median survival, the point by which half of those with glioblastoma have died, is usually put at 14 months,” Ms. Morris wrote in the essay. “Only one in 20 people survive five years.”
She herself made it to that five-year mark, and she used those years to educate herself about the illness and become an advocate for a different approach to treating it, one that didn’t automatically default to surgery, radiation and chemotherapy.
“The problem with this regime is that it is, as my neuro-oncologist delicately put it, ‘suboptimal,’” she wrote. “Bluntly, for a vast majority of patients, it doesn’t work.”
That neuro-oncologist was Dr. Fabio M. Iwamoto of Columbia University’s Department of Oncology.
“She knew then that something needed to be done and that patients like her had enormous power,” Dr. Iwamoto said in a statement. “Despite being busy with the tumor treatments and looking after three children, Jessica found the time and energy to be a pioneering advocate of a new contract between the medical profession and the patient community.”
Through Our Brain Bank, the nonprofit she founded, Ms. Morris encouraged treating more than just the tumor.
“When you’re suddenly told that you have a condition that is considered terminal,” she said on the podcast the Human Guinea Pig Project in 2019, “the one thing you desperately need is psychological support, and it’s not there.”
She also wanted to ensure that patients had access to and funding for second opinions, so that those who were told “nothing can be done” by one doctor might seek out a more aggressive approach if they chose. She herself pursued several novel approaches, her husband said, including an experimental therapy that one of her doctors had suggested, involving an injection of herpes virus into the tumor in the hope of stimulating a defensive response.
“Even if I don’t know exactly how particular treatments might work — and nobody really does — it kind of makes sense to try and block as many pathways to the cancer as possible,” Ms. Morris explained on the podcast.
Another goal was making it easier for glioblastoma patients to enroll in clinical trials of drugs and therapies. The process of getting into such trials can be cumbersome and frustrating to patients with a limited life expectancy. And since glioblastoma is a complex disease in which each tumor has different characteristics, Ms. Morris and her organization developed an app that patients can use to report symptoms and share information with one another and with medical professionals — as an aid to understanding the disease better.
“Patient symptom data is a largely untapped pool of information that can inform researchers, so they can better design treatments,” Ms. Morris said during a 2019 panel discussion on patient-centric treatments. “Involving patients in that process has the added benefit of providing people with the disease to feel they are managing the disease, and not the other way ’round.”
Jessica Jane Morris was born on July 22, 1963, in Greenwich, near London. Her father, Bill, was an architect, and her mother, Elizabeth (Villar) Morris, is an artist.
Ms. Morris studied history at King’s College, Cambridge, graduating in 1985. She and her family relocated to New York in 2006.
In New York she worked as a communication strategist, most recently for FleishmanHillard, a public relations and marketing firm, where she was a senior vice president. Ms. Morris kept a blog during the course of her disease and wrote a book, “All in My Head,” which is to be published this year by Little, Brown.
In addition to her husband, whom she married in 1993, and her mother, she is survived by a brother, Ben; a sister, Frances Morris; a son, Felix; and two daughters, Tess and Emma.
Dr. Iwamoto noted that Ms. Morris’s commitment to improving the prognosis for glioblastoma continues after her death.
“She donated her brain,” he said in a phone conversation. “She was very passionate about research, for her and for everyone else.”