Brooke Ellison, Stony Brook University bioethicist, stem cell advocate, dies at 45

Brooke Ellison, who, after being struck by a car and paralyzed as a young girl, became the first quadriplegic person to graduate from Harvard University, then built a career as a Stony Brook University bioethicist and stem cell research advocate, has died. She was 45.

Ellison’s parents, Edward Ellison and Jean Ellison, with whom she lived in Stony Brook, said they did not yet know the cause of her death. Ellison died Sunday at Stony Brook University Hospital.

In 1990, Ellison was 11, walking across Nicolls Road in Stony Brook on her way home from her first day of middle school, when she was hit by a car and left paralyzed from the neck down. A young life filled with soccer, karate, cello and church choir practice ended. Years later, for a story that was published days before her graduation from Ward Melville High School, she told a Newsday reporter that memories of what she called her first life came to her daily.

"I wouldn't want to repress them,” she said. “The trick is getting past the memories and dealing with the present. Sometimes that can be hard."

A second life

In Ellison’s second life, she used a battery-powered ventilator to breathe. To move, she used a wheelchair controlled by a sip-and-puff mouth switch. To write, she used what a Newsday story described as a “blowing and sipping technique to spell out the words in Morse code."

That technique was ultimately, mercifully supplanted by more advanced technology, Jean Ellison said. In recent years, she said, her daughter used voice recognition software to write, along with an adaptive computer interface.

“She used to move the mouse faster with her tongue than we could with our hands,” Jean Ellison said.

Jean Ellison, whose first day at work as a special education teacher was the day of the crash, gave up that career to assist her daughter in school. She later moved to Massachusetts to assist her daughter at Harvard for college and two years of graduate school. Edward Ellison, who worked for the Social Security Administration, cared for Brooke’s siblings, Reed and Kysten, on Long Island and visited on weekends.

At college graduation, before a crowd that numbered in the thousands, Ellison delivered a commencement speech without notes, her mother said. Ellison graduated with a degree in cognitive neuroscience. 

Mother and daughter later published a book about the path to that moment: “Miracles Happen: One Mother, One Daughter, One Journey” that was made into a 2004 A&E movie, “The Brooke Ellison Story,” directed by Christopher Reeve, who’d been paralyzed in an equestrian accident.

Publishers Weekly praised the book for its portrayal of “living with a disability, the importance of mother-daughter relationships and celebrating everyday wonders.”

A run for office

The Reeve and Ellison families grew friendly during filming of the movie. Maggie Goldberg, president and CEO of the Christopher & Dana Reeve Foundation, said in a statement Monday that Ellison “created a life that defied conventional thinking about what it means to live with a disability and dedicated herself to the service of others.”

In 2006, Ellison, running as a Democrat, attempted to unseat Republican State Sen. John Flanagan in the 2nd Senate District, serving Brookhaven, Huntington and Smithtown. One campaign commercial cited challenges to school, health care and the environment, before closing with the tagline: "Brooke Ellison kicked butt in Harvard. Imagine what she'll do in Albany."

In 2021, she published another autobiographical book, “Look Both Ways.”

At Stony Brook, where Ellison finished doctoral work in sociology in 2012, she was an associate professor in the School of Health Professions. She taught medical ethics, science ethics and health policy. She researched the intersection of disability and bioethics and strategies to make health care accessible to those most in need.

From 2007 to 2014, Ellison served on the Empire State Stem Cell Board, which designed New York State’s stem cell policy and fosters stem cell research in the state. Scientists believe that stem cells, which can divide for prolonged periods in culture and yield specialized cells, may hold promise to therapies for a variety of diseases and even spinal cord injuries like Ellison’s.

“She was realistic, but she was also optimistic,” said Jean Ellison, adding that her daughter did not necessarily believe she would be cured but “held out the hope that she would be able to at least see it in her lifetime.”

Stacy Jaffee Gropack, dean of Stony Brook’s School of Health Professions and also a professor, said Ellison had planned to take a fellowship next year at Harvard’s Carr Center for Human Rights Policy.

“Advocacy, education, scholarship; she did it all,” Gropack said. “Her most important work was advocating for the rights of people with disabilities and thinking about how to make their lives better.”

Besides her parents, Ellison is survived by a brother, Reed Ellison, of Westfield, New Jersey, and a sister, Kysten Ellison, of Stony Brook. She is also survived by five nephews. 

Visitation is scheduled from 2 to 8 p.m. Monday at Bryant Funeral Home, 411 Old Town Rd. in East Setauket. A memorial is being planned for a later date. 

The Ellison family has established the Brooke Ellison Legacy Scholarship at Stony Brook University.