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Stephen Warren remembered for changing the world’s understanding of Fragile X syndrome

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UPDATE (Nov. 18, 2021):

A memorial service for Dr. Stephen Warren will be held on Tuesday, Nov. 30, at 4:30 p.m. in Emory's Cannon Chapel. A reception will follow the service. Directions to Cannon Chapel

Due to space capacity limits, in-person attendance requires RSVP (go to this link or contact The memorial service can be viewed virtually through this Zoom link. In lieu of flowers, donations will be accepted to the Stephen T. Warren Memorial Fund.

The Emory community is mourning the passing of Stephen T. Warren, the founding and former chair of the School of Medicine’s Department of Human Genetics. Warren died peacefully at his home in Atlanta on June 6. He was 67.

Tributes to Warren poured in via social media from various corners of the world, lauding him for his research leadership and his incredible contributions to the world’s understanding of fragile X syndrome, a leading cause of inherited intellectual disability and autism.

Warren was the former Charles Howard Candler Chair of Human Genetics and the William Patterson Timmie Professor of Human Genetics at Emory. He joined the School of Medicine as an assistant professor in 1985 in the Departments of Biochemistry and Pediatrics (medical genetics) and was promoted to associate professor in 1991 and full professor in 1993. In 2020, Warren stepped down as department chair after 35 years of service to Emory.

Warren’s research at Emory focused on the mechanistic understanding of fragile X syndrome. In 1991, he led an international effort that identified the gene mutation responsible for the syndrome, which paved the way for treatments.

Warren then discovered the learning and memory protein whose production is affected by the mutated gene. That discovery allowed him to develop the first diagnostic test for fragile X. He also led clinical trials for the development of drugs to treat the condition. In recent years, he and his collaborators initiated a project to identify the genetic origins that predispose some individuals to schizophrenia.

“Dr. Warren was a remarkable scientist and human being,” says Jan Love, Emory’s interim provost and executive vice president for academic affairs, extending her deepest condolences to his family. “His research transformed the lives of patients and families grappling with fragile X syndrome. His passing is a huge loss for the Emory community and beyond.”

School of Medicine Dean Vikas Sukhatme remembers his first impressions of Warren vividly. “I had the pleasure of knowing Dr. Warren for only a few years, but was immediately struck by how gifted a scientist, leader, mentor and friend he was,” Sukhatme says. “He encouraged me to think boldly for the Emory School of Medicine. We owe him a lasting debt for his immense contributions to the school and to science broadly. We will miss him.” 

Inspirational researcher, mentor and friend

While in college, Warren joined the American Society of Human Genetics and served the society in many capacities over his 50-year-long career, including as the president of the society in 2006. In 1999, he won the William Allan Award, the society’s highest honor. In 2003, Warren was an inaugural inductee of the National Institute of Child Health and Human Development’s Hall of Honor for the “identification of triplet repeat expansion as the cause of fragile X syndrome and as an entirely new inherited mechanism of genetic disease.”

In 2011, Warren received the March of Dimes/Colonel Harland Sanders Award for lifetime achievement. Warren was elected to the National Academy of Medicine in 2004, the National Academy of Sciences in 2011 and the American Academy of Arts and Sciences in 2015. He was a diplomat of the American Board of Medical Genetics and the former Editor-in-Chief of the American Journal of Human Genetics.

Apart from his research contributions, Warren was also known for his generosity and commitment to nurturing the next generation of scientists; numerous postdoctoral fellows as well as graduate and undergraduate students at Emory and beyond benefitted from his counsel, guidance and mentorship.

Emory professor Peng Jin, who succeeded Warren as chair of the Department of Human Genetics, called him an inspirational figure for him and others at Emory.

“I had the privilege and honor of working with Steve for the past 22 years. Steve was an incredible mentor, colleague, collaborator and wonderful friend. He is a game changer in human genetics and his work has inspired so many scientists and impacted so many families,” Jin says.

“Steve was always thoughtful, dedicated and unstintingly generous with his time, his enormous intellect and his impeccable judgment,” he continues. “He brought international recognition and prominence in genetics to Emory. The Department of Human Genetics is part of his legacy that we will carry on. His passing is an incredible loss, and we will miss him dearly.”

Jeremy Boss, professor and chair of the School of Medicine’s Department of Microbiology and Immunology, was Warren’s close friend and colleague for more than 30 years. “I had the privilege of sharing many moments with him,” Boss recalls. “As a young faculty member, Steve had a clear vision of what he wanted to accomplish as a scientist, a leader and a mentor.

“Foremost on his list was to make a difference in the field, and we know that he did so in spectacular ways. His science was truly at the apex of human genetics and many patients benefited from his discoveries,” he notes. “Steve also had keen insight into how organizations should work and was able to create a world class department and put it into place and take form. His words of council and mentorship were always meaningful and thoughtful. I will miss him and will cherish memories of our times together.”

Born in 1953 in East Detroit, Michigan, Warren was an only child whose dentist father sparked an early interest in science. He began his undergraduate studies at Michigan State University and graduated with a BS in zoology and continued there to get his doctoral degree in human genetics. Warren completed his post graduate training at the University of Illinois at Chicago at its Center for Genetics and at the European Molecular Biology Laboratory at its main site in Heidelberg, Germany. He joined the Howard Hughes Medical Institute as an investigator in 1991. He left that position in 2002 to serve as the founding chair of the Department of Human Genetics at Emory’s School of Medicine.

Warren is survived by his wife, Dr. Karen Warren; his son, Thomas Warren; and his son’s fiancée, Desiree Chand.

In lieu of flowers, the family asks that donations in Warren’s honor be sent to FRAXA, a foundation dedicated to research on fragile X.

Memorial services will be held at a date yet to be announced.

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