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Xinsheng “Cindy” Cai grew up in a family that had gotten on the wrong side of Mao Zedong’s Communist government in China. Her grandfather was sent to prison because of his political opinions and died there. Her father was dispatched to a labor camp as was her older sister. Her brother, who was 13 years older than Cai, was denied the chance to attend college and instead went to work in a factory. While unloading some lumber, he was hit in the head by a log and experienced a traumatic brain injury (TBI). Cai became one of his caregivers, feeding him applesauce and keeping him comfortable and entertained during his convalescence. “We were very close,” she says. “He is my best friend.”
The familial persecution eventually let up after Mao’s death and Cai was allowed to attend college. She traveled from her hometown of Harbin in northern China to the capital of Beijing to get a degree in early childhood education from Beijing Normal University (BNU). She chose her major to honor her mother who believed it was important that children be well educated to become productive citizens. Cai went on to get a master’s degree in education and became a lecturer at BNU and an editor of the Chinese Journal of Special Education. But she wanted a doctorate and at that time, there was no PhD program in China for her to pursue. Cai left in the late 1990s for a doctoral program at Vanderbilt University in Nashville, Tennessee.
At Vanderbilt, Cai studied special education and advanced research methods. After getting her PhD in 2004, she got a job as a research analyst at the nonprofit, nonpartisan American Institutes for Research (AIR). There she embarked on a series of studies to uncover best practices to support teachers and students. But after attending a training session by a Canadian researcher on knowledge translation, her focus shifted. “Her workshop aligned really well with my interest in translating research into practices. It’s doing what works to make a real impact on people’s lives,” Cai says.
Meanwhile, in 2006, the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) had launched the Model Systems Knowledge Translation Center (MSKTC) to translate and disseminate the findings of NIDILRR-funded Model System Programs in spinal cord injuries (SCI), TBI, and burn injuries. For the first five years of its existence, the MSKTC was run out of a university on the West Coast, which created 41 consumer fact sheets and conducted research studies. When the grant was up for renewal in 2011, NIDILRR picked Cai’s team at AIR to run it and the work has stayed there ever since. Cai, PhD, is the Principal Investigator and Project Director of the MSKTC.
From the beginning, Cai threw herself into the work of translating research into user-friendly accessible information for people with SCI, TBI, and burn injuries and those who support them. In the first five-year grant cycle under AIR, more than 300 consumer products were added to the MSTKC.org website. In the second cycle, there were 500 and now in the third cycle, there are 1,000 consumer products, ranging from factsheets and comic strips to podcasts and videos. The formats were chosen to address the various learning styles of the millions of patients who visit MSKTC.org from around the world. The MSKTC has won 18 national and international competitions for its innovative work and was recognized for making an impact on global health in 2024 when it received gold and silver Anthem Awards.
“We are giving people hope,” she says. “We give them knowledge and tools to empower them and to take control of their health. Our resources help them communicate and ask their doctors intelligent questions. It has been such a great joy to see that my work has touched the lives of millions of patients like my brother who survived a TBI.”
Cai has overseen the redesign of the MSKTC’s website three times to stay current with fast-evolving technology. By tracking the site’s analytics, she and her team realized that most people were accessing the site on mobile devices where PDFs don’t work well so in 2018, the site became mobile-responsive. “We’re always trying to enhance the user experience of our site,” she says. Cai also has fielded an army of more than 200 “ambassadors” to get the word out about MSKTC’s resources in their communities, at rehabilitation hospitals, and at professional conferences. Cai herself is the biggest ambassador, of course. She is currently giving talks at medical schools around the country, spreading the word to the next generation of clinicians and researchers. The work has paid off. Back in 2013, the MSKTC website had 4,000 visits annually. That number exploded to almost 2 million in 2024 with users coming from almost every country around the world.
The Center for Rehabilitation Outcomes Research at the Shirley Ryan AbilityLab, which houses the NIDILRR-funded Midwest Regional Spinal Cord Injury Care System, has partnered with Cai and the MSKTC to develop resources for people living with spinal cord injuries. Most recently, CROR and Cai collaborated on a series of videos and podcasts called “I Was a Wheelchair Kid.” “Cindy is energetic, engaged and wants to support the work of the Model Systems grantees,” says CROR Director Allen Heinemann, PhD. “She cares about the professionalism of the website and makes sure that it benefits its target audiences and the people who work with them. It’s her legacy and she cares about it deeply.”