The communications consultant Jessica Morris did much to give a voice to people who lacked one. In the years up to her death at the age of 57 from brain cancer, she made her illness the basis of a campaign to find treatments for others.
In January 2016 she was hiking in a valley north of New York when she found herself trying to speak: “Sounds came out of my mouth, but they weren’t words,” she said later. That seizure led to a diagnosis of glioblastoma (GBM), the most aggressive form of brain cancer, for which the median survival rate is 14 months. Only 5% of patients survive for five years.
Jessica counselled Tessa Jowell, the former cabinet minister, on the disease before her death in 2018. Senator John McCain died from it later that year; Beau Biden, son of the eventual president Joe Biden, had died from it in 2015, and Jessica worked closely with Biden Sr’s cancer initiative team to raise the profile of brain tumours.
GBM is a rare and devastating condition, and pharmaceutical companies that might otherwise fund research have largely neglected it. Progress is challenging when a clinical trial takes longer than most patients have left to live.
Shortly after her diagnosis Jessica set up Our Brain Bank, a charity dedicated to changing that situation, and recruited her neuro-oncologist, Fabio Iwamoto, to its medical advisory board. “Jessica knew that something needed to be done and that patients like her had enormous power,” Iwamoto said. “Despite being busy with the tumour 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.”
Much as patient activists had with HIV/Aids in the 1980s, Jessica understood that those living with the disease held much of the information required to treat it. She devised the first smartphone app to help GBM patients gain control of their data. Individuals could use that information to manage their own treatment or to get a second opinion. It could also be pooled for research purposes.
Jessica made information about clinical trials easily accessible and invited more world-class oncologists to join Iwamoto as medical advisers. By forging links between doctors and patients the world over, she hoped GBM would move “from terminal to treatable, powered by patients”.
On the basis of responses from hundreds of patients and their carers, Our Brain Bank established what it termed a GBM bill of rights, calling for improvements in the standard of care and patients’ quality of life. In the UK, the first academic paper based on data gathered by the app is under review, prior to publication.
Jessica donated her brain to research, to be conducted by Columbia and Harvard universities, where her many often experimental treatments took place.
Born in Greenwich, south-east London, Jessica was the daughter of Elizabeth (nee Villar), a printmaker, and Bill Morris, an architect. Like her brother, Ben, also an architect, and sister, Frances, now director of Tate Modern, Jessica had a flair for the visual, winning a national art competition in 1977, but her true love was performance.
Musical theatre at her school, now Haberdashers’ Aske’s Hatcham College, in New Cross, led to her joining the children’s troupe at the English National Opera for productions including La Bohème and Massenet’s Werther. Until the age of 18 she sang in St Alfege church choir in Greenwich, gathering cassock-clad choristers for illicit cigarettes.
At Cambridge University she gained a history degree in 1985 and met Ed Pilkington, now chief reporter for Guardian US; they married in 1993. After university her galvanic sociability found its social conscience. In 1986 Jessica volunteered for the Solidarity Campaign in Nicaragua, where she summoned Ed to join her. They stayed for 18 months and built housing for rural families displaced by the Contra war.
Upon her return to the UK Jessica realised that her facility for communication could enable her to articulate other people’s needs. She joined the British Refugee Council in 1987 and two years later became head of PR at the charity Shelter.
Alongside its director, Sheila McKechnie, Jessica helped make homelessness a mainstream issue at the end of the Thatcher years. Relentlessly inventive, she found angle after angle every day, lobbying politicians and mortgage lenders alike. After McKechnie’s death in 2004 Jessica helped found the Sheila McKechnie Foundation, devoted to “unleashing civil society’s capacity to create profound, long-term change”.
When Jessica went into the private sector in 1993, becoming a board director at the PR agency Fishburn Hedges and working for clients such as Barclays Bank, she was the first consultant to join from the non-profit world. As an independent consultant, she worked on reorganisation of the Equal Opportunities Commission with the then chair, Dame Julie Mellor, in 1999; became head of corporate social responsibility at HMRC in 2005; and advised a number of blue-chip companies on their corporate social responsibility programmes.
In 2006, Jessica and Ed moved to New York with their children, Felix, Tess and Emma. Ed and I had been colleagues for many years, but it was as neighbours in Brooklyn that Jessica and I became close. After a break to establish the family’s new life there, in 2010 Jessica returned to communications work, championing sustainable cities for ITDP (the Institute for Transportation and Development Policy). Three years later she opened the first US office of the PR and marketing firm Fishburn, owned by the Omnicom Group.
After founding Our Brain Bank, Jessica wrote a book, All in My Head, to be published next year. It recounts the strong sense of purpose she had discovered despite the upending of her family and professional lives.
She is survived by Ed, her children, her siblings and her mother.