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Brooke Ellison

Prepared by Samantha Rutt

Miracles happen. 

These words were often repeated during Brooke Ellison’s Celebration of Life on March 24.

Friends, family and loved ones came together to celebrate the remarkable life of Brooke Ellison, a woman whose resilience and determination inspired countless others. The room was filled with laughter, tears and fond memories during the three-hour celebration. 

Brooke’s journey, from a devastating childhood accident to becoming a beacon of hope and achievement, was the epitome of courage and determination. Despite being paralyzed from the neck down at the tender age of 11, Brooke refused to let her circumstances define her. Instead, she embarked on a journey that would see her break barriers and defy expectations at every turn.

The celebration, held at Stony Brook University’s student center, was a testament to the profound impact Brooke had on the lives of those around her. As attendees shared stories and memories, it became evident that Brooke’s spirit shone bright in every corner of the room.

“I personally do not have any memories of my life without my sister. She was born when I was 2 1/2 years old and she was the greatest gift that had been given to me by my parents,” Brooke’s sister, Kysten Ellison, said.

She exchanged fond memories of her sister growing up, sharing young Brooke’s aspirations to be a dancer and her love of dancing.

“Every single night, my dad would routinely sit between both of our beds and read us our favorite bedtime stories. After my dad finished his nightly reading and went to bed, Brooke and I would continue to chat,” she added. “We would talk about our future hopes and dreams and what we wanted to be when we grew up. And, ironically, my sister always wanted to be a dancer. She wanted to share her love of dancing with the entire world.”

Brooke’s brother, Reed Ellison, echoed this sentiment, recalling their deep bond and shared love for games and intellectual pursuits.

“Brooke was my best friend,” he said. “When other kids were out partying or at friends’ houses, Brooke and I stayed home and challenged each other to games of Scrabble or worked on logic problems, or crossword puzzles together. These are some of the best memories I have and I will cherish them forever.” 

Friends and family reminisced about Brooke’s vibrant personality, her love for themed parties and her infectious yet nearly silent laughter that could brighten even the darkest of days. Photos of Brooke, flashing her trademark smile, adorned the venue, serving as a poignant reminder of her enduring spirit.

Brooke’s legacy extended far beyond her personal achievements. As an advocate for stem cell research and disability rights, she paved the way for others to follow in her footsteps. Throughout her life Brooke pursued many things: She was a Harvard graduate twice over, an associate professor at Stony Brook, a researcher, a leader of various groups like the Inclusion in Innovation team in the Vertically Integrated Projects Program, a founder of SBU’s VENTure Think Tank, a selection for the World Economic Forum Young Global Leader, once a state Senate candidate and so much more. 

Her friendship with actor Christopher Reeve, himself a quadriplegic, underscored her impact on a global scale. Her sister shared her experience, watching her son, Carter, grow close to Brooke through their common love for comics and superheroes, especially Superman.

“My sister meant the world to a special little boy. This sweet little boy idolized my sister like nobody else on this planet. He liked everything that Brooke liked,” Kysten expressed about her son’s relationship with “Aunt Brookie” who was “hands down and always will be Carter’s favorite person, and we will continue to brag about her as time goes by.”

“After learning that Brooke was friends with Christopher Reeve, Carter became obsessed with watching clips from the Superman movies. As a matter of fact, Reed had recently purchased Carter a Superman costume that he put on every day when he got home from school and pretend to fly around the house,” she said.

The celebration also featured Brooke’s father, Ed Ellison, nicknamed “Steady Eddy” for his unwavering support of the relationship of Brooke and his wife, Jean.

Behind each speaker a photo stood as a backdrop. As Brooke’s father spoke, a photo of him smiling wide was projected with him playing with his daughter’s braided hair as she laughed with vigor. 

“People often use the phrase 24/7 to describe efforts being made on something or time spent with someone. In most cases, it’s really hyperbole — but with Brooke, Jean and her relationship and dedication to Brooke — 24/7 was not an exaggeration,” he said. “They were inseparable. Almost one person. Jean would describe it as ‘Brooke is the brains, I’m the brawn.’”

The proud father described what dedication looked like for the Ellison family, more specifically, for his wife.

“Jean would get up at 3:45 every morning and go to work getting Brooke ready for the day. And when I tell you, she never complained, you need to know that to be the truth. I know, I was there,” he said.

“In 33 1/2 years [since the accident], Jean never took a sick day, never went on vacation, never put herself before Brooke. A dedication and love that was so beautiful to be a part of. And Brooke’s admiration and gratitude to her mother was palpable,” her father added.

Among all the heartfelt tributes, a short film made by a friend of Brooke’s father, Todd Leatherman, showcased Brooke’s remarkable journey. The film shared testimonials from Brooke herself, clips from her experiences speaking at various events and coveted moments from her life.

As the celebration drew to a close, there was a sense of both loss and gratitude in the air. In true Brooke fashion, the guests were asked to sing themselves out to “That’s What Friends Are For,” as a tribute to her love of sharing life with others. 

Event emcee and longtime friend, Justin Krebs, shared an excerpt from Brooke’s autobiography, “Look Both Ways.” “My life story is a love story. My life is a life of love and it is this love that makes me who I am,” Krebs read. As Brooke goes on to write, she describes her loves, “her love of laughter, her love of learning, her love of being an inspiration to others for loving her friends, and her love of family.” She also writes that “one of the biggest gifts I have been given is my ability to share my life with people.” 

Brooke Ellison passed away on Feb. 4, in the care of Stony Brook University Hospital. While Brooke may no longer be with us in body, her legacy of courage, determination and boundless optimism will forever remain etched in the hearts of all who had the privilege of knowing her.

In honor of Brooke’s impact and legacy, Stony Brook University has created a scholarship, the Brooke Ellison Legacy Scholarship. To contribute, send a gift to the Stony Brook Foundation at www.stonybrook.edu/commcms/foundation/types.

Prepared by Daniel Dunaief

Brooke Ellison, 45, a pioneering disabilities advocate whose abilities with words and compassion far outdid her disability, died on Sunday, February 4.

Ellison was a tenured Associate Professor in the School of Health Professions in the Department of Health Sciences at Stony Brook University.

A resident of Stony Brook, Ellison was returning home from Murphy Junior High School as an 11-year old when she was struck by a car. The accident, which paralyzed her from the neck down, didn’t deter her budding academic interest or her ambitions.

As soon as she woke from the accident, she insisted she not fall behind in school.

With her mother Jean at her side throughout her education, Ellison became the first quadriplegic to graduate in 2000 from Harvard College, where she received magna cum laude honors in cognitive neuroscience and gave the class commencement speech.

Ellison earned a Master’s in Public Policy in 2004 from Harvard’s Kennedy School of Government and received her PhD in sociology from Stony Brook University in 2012.

A passionate advocate for accessibility and opportunity for the disabled, Ellison conducted research on the ethics and policy of science and health care.

Her mission “was to turn what happened to her into a [way to] help people who are handicapped achieve independence,” said Miriam Rafailovich, Distinguished Professor in Material Science and Engineering.
Ellison wrote two books about her life. The first, called “Miracles Happen” became a movie directed by Christopher Reeve titled “The Brooke Ellison Story.” More recently, Ellison published “Look Both Ways.”

Jean Ellison said her daughter felt her recent book was one of her most important contributions. Knowing she was in failing health after surviving three bouts with sepsis over the last year and a half, Brooke Ellison felt a sense of urgency to share her experiences.

“She poured out [her life] to the universe through this book,” said Jean Ellison.

While Ellison died young, she lived for over 33 years after the accident, which is well above the seven years the medical community expected at the time for someone on a ventilator.

‘Deep sadness’

Ellison served on several committees and boards, including the Board of the Directors of the New York Civil Liberties Union and the search committee for a president of Stony Brook.

In a letter to the campus community, President Maurie McInnis, who expressed her “deep sadness” for Ellison’s passing, recounted how Ellison was one of the first people she met on campus.

“Her legacy at Stony Brook and beyond is defined by passionate advocacy for inclusive education, healthcare and disability rights,” McInnis wrote in a letter to the campus community. “She helped alert me and others to our blind spots and offered many ideas for making this campus more inclusive and welcoming.”

Ellison was recently teaming up with students using drones and artificial intelligence images to map the topography of Stony Brook.

“To go from one building to the next looks like a straight pathway, but at the end, a one-inch drop, which is not encoded anywhere” could be a huge problem for someone in a wheelchair, said Rafailovich.

Ellison’s students asked her what she would want a robot near her that she could control to do. She suggested a hand she could control that could turn the pages of a book.

Ellison was working with the Federal Emergency Management Agency to ensure that people with disabilities who need power for ventilators or other equipment receive immediate attention after power disruption.

“She noticed during Hurricane Sandy that emergency workers had no idea where people who were on life support were during two weeks,” said Rafailovich.

Ellison was working with the state to get a new system where people on life support could receive help quickly.

Ellison had planned to do a fellowship at the Harvard Kennedy Carr Center for Human Rights Policy.

Caring for everyone

In addition to her focus on helping people with disabilities achieve independence, Ellison served in many capacities at Stony Brook, including as the Director of the Center for Community Engagement and Leadership Development.

Among her many efforts, Ellison also ran for election in 2006 for the New York State Senate, where she lost to republican incumbent John Flanagan.

Ellison was a committed educator who asked students before they met her in an ethics class to describe what they thought would make a life not worth living. Students suggested this would include not being able to do things they needed, needing care from someone else, or living on life support.

At the end of the semester, she asked the same question.

“They thought if they were on life support or if they had to have someone take care of them, maybe it could be done,” Jean Ellison said. “Their whole outlook changed.”

Senior Sabah Bari, who is a Health Science student, appreciated how Ellison spent the first 15 minutes of class asking how students were doing. Describing Ellison as “one of the most influential people I’ve gotten to know,” Bari plans to dedicate her pursuit of a master’s in public health to Ellison.

Stacy Gropack, Dean of the School of Health Professions explained that the school is eager to make sure students are doing well and feeling well at all levels.

“Many of our instructors do that,” Gropack said, but “Ellison in her position took it to a different level. She was always very concerned that students were in the right place and were healthy. She made sure students had the capacity to succeed at all levels.”

A dedicated family

Ellison received considerable ongoing support from her family.

Jean Ellison served numerous roles, from getting up at 3:45 am each day to get her dressed to driving her to ensuring her slides were ready and in order for her presentation. It took six hours from the time Ellison awoke until she was ready to leave.

Jean Ellison is “probably one of the most dedicated, strongest women I know,” said Gropack. Ellison “could not have accomplished what she did without [her mother] on all fronts.”

Mathias Risse, Berthold Beitz Professor in Human rights, Global Affairs and Philosophy at the Harvard Kennedy School, recalled how he taught an ethics class that included Ellison in the fall of 2002.

Ellison was “one of the most talented students in the class,” Risse wrote in a memorial to his former student. “Jean was there with her, every time, and she was as much a member of the [class] of 2004 as [Ellison] was herself.”

When the two of them were on campus, “everyone knew who they were, mother and daughter,” Risse wrote.

Ellison’s father Ed and her siblings Kysten and Reed provided important, meaningful and ongoing care for her.

“One of us had to be with her 24 hours a day, seven days a week,” said Ed Ellison. “Jean and I feel very blessed to have had the opportunity to help her do what she wanted to do. It was a life well-lived.”

Ellison adored her family and, in particular, her five nephews, who not only returned her affection, but were also fiercely protective of her.

One of Ellison’s nephews had a cat that she almost ran over in her wheelchair. She asked her students to help her design a 360 degree camera so she could survey the perimeter when the cat was nearby.

“That’s the kind of independence she wanted,” said Rafailovich.

Ellison shared affection with her family and friends by blowing kisses frequently. Her father stroked her cheek and lifted her up out of her chair and put her arms around his neck.

“The love she had for everyone oozed out of her,” Jean Ellison said. Her daughter “constantly told people how much she loved them.”

Before the accident, Ellison had been a ballet dancer. She would sometimes dream of herself dancing.

“We both like to think that she’s dancing now,” said Jean Ellison.

Stem cell research

Ellison became a powerful voice in some of the earlier battles in 2000 over stem cell research. Stem cells are undifferentiated cells that could one day help in the treatment and care of people with neurological limitations.

Ellison, who founded the Brooke Ellison Project, helped establish the New York State stem cell research organization, which provided research funding outside of the federal level.

Ellison and the Christopher Reeve foundation “had the courage to put [state funding] in place,” said Rafailovich. “She saw stem cell research as the key if we’re ever going to regenerate nerves.”

Ellison recognized any new treatment wouldn’t happen immediately, but wanted to help people in the future who were dealing with similar challenges.

Ellison is featured in the upcoming documentary “Super/Man: The Christopher Reeve Story,” which was recently shown at the Sundance Film Festival.

Ellison served as a board member on the Empire State Stem Cell Board, which designed New York State’s stem cell policy from 2007 to 2014.

In 2017, Ellison also served on the board of directors of the New York State Civil Liberties Union and, in 2018, was chosen as a political partner for the Truman National Security Project.

“We count ourselves incredibly lucky to have known her and are extraordinarily humbled by who she was and what she accomplished in her short life,” NYCLU Executive Director Donna Lieberman wrote in an email. “I have benefited immeasurably from [Ellison’s] wisdom and friendship, and I am especially grateful or her patience and determination in helping the NYCLU to better understand and advocate for the rights of people with disabilities.”

Leaders from the Truman National Security Project, which is a diverse nationwide community of leaders united with the goal of developing smart, national security solutions that reinforce strong, equitable, effective and non-partisan American global leadership, expressed their appreciation and admiration for Ellison’s contributions.

Ellison was a “visionary, leader, teacher, and, most importantly, a true friend to us and the disability community. [Ellison’s] eloquence captured the heights and depths of the disabled experience – beauty, pain, nuances, and silver linings – while pushing society’s boundaries of a more inclusive and dynamic world. Amongst [Ellison’s] vast list of accomplishments and accolades, her kindness and strength touched everyone she met,” wrote Jessica Gottsleben and Kristin Duquette, TruDisability Experts, in a statement.

Ellison thought well outside of her wheelchair and outside of the proverbial box.

In the first day of class, Bari recalled how Ellison asked students to think about the character Thanos from the Marvel series.

Bari recalled wondering, “are we in the right class? Where is she taking us?”

Throughout the class, Bari suggested that she and her fellow students rethought numerous aspects of their lives.

In her own words

In the introduction to her book “Look Both Ways,” which people can hear Ellison read on YouTube or on her web site BrookeEllison.com, she shares her life and perspective.

Look Both Ways


“People living with disability are celebrated yet rejected, are the objects of both praise and of ridicule, and are heralded for their understanding of challenge, while often left to battle those challenges on their own,” she wrote.

Ellison continued, “the lens from which I view the world is not one of disability, but rather one of humanity touched by disability, which serves to heighten the lessons fundamental to our lives: those of adaptation and problem solving, leadership and growth, compassion and hope. These are the lessons of disability. These are the lessons of life.”


Ellison is survived by her parents Ed and Jean Ellison, her sister Kysten Ellison and her husband David Martin, their sons Carter and Harrison, her brother Reed Ellison and his wife Ellen Ellison and their three sons Jamie, Oliver and Theodore.

Visitation will be held next Monday, February 12 at Bryant Funeral Home, 411 Old Town Road in Setauket  from 2 p.m. to 8 p.m. The family will hold a private burial service.
How you can help
Those interested in helping to sustain the legacy of Brooke Ellison can donate to the Brooke Ellison Legacy Scholarship through the following website: https://alumniandfriends.stonybrook.edu/site/Donation2?df_id=2660&2660.donation=form1&mfc_pref=T&designation=5701

Stephanie Baez will be one of the guest speakers at the event. Photo from SBU

Stony Brook University recognizes Women’s History Month with its annual celebration that highlights the achievements of women, raises awareness against bias, and promotes social action for equality. This year’s theme #BreakTheBias was adopted from International Women’s Day which is held annually on the first Tuesday in March.  Events will take place through Monday, March 28.

The university’s “Hybrid Opening Program in Celebration of International Women’s Day” will take place on Monday, March 7 at 1 p.m., ET in the Student Activities Center Ballroom A with limited seating, and will also be accessible on Zoom.  This year’s program will feature a discussion about issues facing women with three accomplished SBU alumni — Maureen Ahmed ’11, Stephanie Baez ’08 and Brooke Ellison ’12.

The program will be hosted by senior Cassandra Skolnick, a student member of the Women’s History Month Committee who is majoring in Women’s, Gender and Sexuality Studies. In addition, student moderators will be Amber Lewis, a Junior, Journalism major; Minors in Music and Women’s Gender, and Sexuality Studies and Sanjana Thahura, a  Senior, Biology major with Interdisciplinary Biology Specialization, Undergraduate College Academy Minor in Health and Wellness.  Attendees can register online to attend the opening ceremony on Zoom.

Meet the panelists:

  • Stephanie Baez

    Maureen Ahmed (‘11) is a foreign-affairs officer with the U.S. Department of State in the Bureau of Democracy, Human Rights and Labor (DRL), where she provides policy guidance on how to advance human rights, democracy, and governance across South and Central Asia. Ahmed is also an international human rights activist and policy leader with expertise in diplomacy, foreign policy, human rights, gender, global health, HIV epidemiology, and civil society integration. Prior to DRL, she worked at the Department’s Office of the Global AIDS Coordinator (O/GAC), where she managed the President’s Emergency Plan for AIDS Relief (PEPFAR) South Africa program, the United States’ largest global health assistance program  Ahmed was named a 2020 National Security Fellow with the Truman National Security Project and a 2019-2020 Penn Kemble Fellow with the National Endowment of Democracy.

  • Maureen Ahmed

    Stephanie Baez (‘08) is vice president for Communications and Public Affairs at Global Strategy Group in New York, a public relations and research firm. She leads strategic communications planning initiatives that incorporate traditional and digital communications channels and platforms, as well as grassroots/grasstops components. Baez served as the communications director for Congressmen Hakeem Jeffries and John Conyers, was senior vice president of public affairs for the New York City Economic Development Corporation, and was director of communications and public affairs for the Central Park Conservancy. She earned a Bachelor of Arts degree in Political Science with a concentration in Journalism.

  • Brooke Ellison

    Brooke Ellison (‘12) is an associate professor in Health and Rehabilitation Sciences and Behavioral and Community Health in the Stony Brook School of Health Professions. She is also director of the PhD program in Health and Rehabilitation Sciences, and director of the Center for Community Engagement and Leadership Development. Ellison’s work as a researcher and scholar focuses on the ethics and policy of science and health care, particularly the intersection of disability and bioethics, and strategies to make healthcare and technology accessible to those most in need. Ellison was paralyzed from the neck down after being hit by a car while walking home from her first day of junior high school; 10 years later, she graduated magna cum laude from Harvard University. She received her PhD in sociology from Stony Brook in 2012, was chosen to be a World Economic Forum Young Global Leader in 2014, and in 2017, was chosen to serve on the board of directors and executive committee of the New York Civil Liberties Union. In 2018, Brooke was named a Truman National Security Project Political Partner and was appointed to serve as a commissioner on the Suffolk County Human Rights Commission in 2020.

On Monday, March 21 (2pm, ET)  as part of the speaker series is “In Defense of All Women’s Spaces,” at Melville Library, Special Collections Seminar Room, E-2340.

Stony Brook University graduate instructor Stephanie Bonvissuto will host this discussion:

How does accessing social spaces relate to the social construction of gender and sexual identities? How can site-specific signage taken as signifiers offer a view into societal ethics and cultural ethos? What are the institutional investments in policing bodies and enforcing cis-heteronormativity? And what can queering space (and spatiality) offer in terms of the future design of ‘something else’? This talk takes as its point of departure debates around public gendered restrooms to consider the biopolitics of space, the designs of power and knowledge, and the generative connections between spatial equity and social justice.

On Monday, March 28 (between 3-5pm, ET), “Closing Program in Celebration of International Women’s Day” in the Student Activities Center Ballroom A with limited seating.

Former National Public Radio host of “The Takeaway” as well as New York Times/CNN reporter Tanzina Vega (‘96) will host.

Meet the host: 

For more than a decade, Tanzina Vega’s (‘96) journalism career  has centered on inequality in the United States through the lens of race and gender.  She’s been a reporter and producer for the New York Times and CNN where her work spanned text, digital and broadcast television.  She most recently spent three years as the first Latina weekday host of “The Takeaway” on WNYC, New York Public Radio.  Tanzina has covered many of the most consequential news events of the past decade, including multiple presidential elections, the COVID 19 pandemic, the rise of #BlackLivesMatter, Puerto Rico’s political crisis and the January 6 Capitol insurrection. In 2019 she was awarded the Robert G. McGruder Distinguished Lecture and Award from Kent State University.  Prior to that she was a fellow at the Nation Institute and a Ferris Professor of Journalism at Princeton University.  She is a distinguished graduate of the Craig Newmark School of Journalism at City University of New York where she earned Masters in Digital journalism.  She lives with her son in New York City.

For more information visit https://www.stonybrook.edu/commcms/womens-history-month/