In Memoriam: Brooke Ellison, Ph.D. 

“I am a fighter. My life has been shaped by challenges and adversity of all different kinds, but it has not been characterized by them. I am not defined by them. For every obstacle I have sought opportunity. In each instance of sorrow, I have sought strength. When there has been challenge and adversity, I have looked for resilience and hope. That is what I want people to know about me, as that is how I see myself. That is also what I want people to know about themselves, as that is how I view the world.” – Brooke Ellison 

The Christopher & Dana Reeve Foundation and the entire Reeve family mourn the passing of our friend and colleague, Brooke Ellison, a scholar, disability rights and medical research advocate, author, and more. Through her remarkable life’s work, she helped bring spinal cord injury and disability to the front of the world’s consciousness and raise awareness of and funding for innovative stem cell research.   

In 1990, an 11-year-old Brooke was struck by a car on her way home from school and given little chance of survival. When she awoke, she was paralyzed from the neck down and dependent on a ventilator, but she determined early on that she would not be defined by her injury.

“She set the bar as high as one can aspire,” said Maggie Goldberg, President & CEO of the Reeve Foundation. “With the loving support of her incredible family, Brooke created a life that defied conventional thinking about what it means to live with a disability and dedicated herself to the service of others. A beacon of hope, she will be remembered as a bright light in this world.”

Ten years after her accident, Brooke graduated magna cum laude from Harvard University with a degree in Cognitive Neuroscience. Her amazing journey was captured in a movie directed by Christopher Reeve, The Brooke Ellison Story, which aired on A&E in 2004. Brooke lived on campus with her mother, Jean Ellison, by her side; in addition to exceling in her studies, she founded a student disability advocacy group and gave the class commencement speech, widely covered by national media.

“She is the first to say that her mother — as well as her father, younger brother and older sister — were only the starting lineup on a team deep in talent that made her graduation possible,” reported The New York Times in a cover story about Brooke. She went on to say in her commencement speech, “My mother has been with me, every hour of every day…I would not be here if it weren’t for my mother. None of us has escaped the love and caring of others.” Brooke continued her education by graduating from Harvard’s Kennedy School of Government in 2004 and earning her Ph.D in Sociology from Stony Brook University in 2012. Brooke later taught as a professor at Stony Brook, focusing on the intersection of medical ethics and health policy, as well as serving as Director of the Center for Community Engagement and Leadership Development to empower underserved communities.

Brooke and Jean published a book capturing their story, Miracles Happen, in 2002. Brooke’s second memoir, Look Both Ways, was published in 2020, and shared with the world her adult perspective on the accident and all that followed as she pursued her dreams.

“Brooke was our hero,” said Alexandra Reeve Givens, Reeve Foundation Board Member and daughter of Christopher Reeve, in a statement on behalf of the Reeve family. “Her determination, intellect, and unwavering compassion made her a true leader in the disability community. Our dad’s final project before he died in 2004 was to tell Brooke’s story – a story of family, resilience, and hope. Twenty years later, we are devasted to lose our friend, but forever grateful for Brooke, her family, and a rich life so beautifully lived.”

A dedicated advocate for medical research, Brooke ran for New York State Senate in 2006, focusing her campaign – endorsed by The New York Times – on health care, education, and funding for stem cell research. Later, she founded The Brooke Ellison Project, a nonprofit organization supporting stem cell research. In this capacity, she gave presentations at Harvard University, University of Pennsylvania, Rutgers University (where she was also awarded an honorary doctorate), and The New School, among others. The Brooke Ellison Project also produced a documentary about stem cell research that was screened across the country and was the recipient of the Humanitarian Award in the Long Island Film Festival and the “Mass Impact” Award in the Boston Film Festival.

As a result of her tireless advocacy and leadership, Brooke held numerous prestigious appointments, including the New York State Spinal Cord Injury Research Board; the Ethics Committee of the Empire State Stem Cell Research Board; World Economic Forum Young Global Leader; a member of the Board of Directors and Executive Committee of the New York Civil Liberties Union; Truman National Security Project Political Partner; and commissioner on the Suffolk County Human Rights Commission. Among her honors, Brooke was inducted into the Suffolk County Women’s Hall of Fame; presented with the Inspiration Award at the 2008 World Stem Cell Summit; and was announced as a New York State Woman of Distinction.

Brooke generously shared her invaluable perspective to inform the Reeve Foundation’s work in multiple areas, including research and the role of assistive technology in fostering independence and good quality of life.

She would also consult with the Foundation’s Information Specialists, sharing personal insights to help other families, especially those with a child using a ventilator. Her professional service to our mission and the friendships developed with our team and community underscore her profound impact. She will be deeply missed.