Skip to navigation

What we're up to

news News Friday, June 28, 2019 Friday, June 28, 2019 3:06 PM - Friday, June 28, 2019 3:06 PM

Student researcher joins Portland Shriners Hospital to study her own condition

Student researcher joins Portland Shriners Hospital to study her own condition

Shriners Hospitals for Children — Portland recently welcomed a student researcher to the research team who was born with the condition that she is now dedicating her life to studying! Jennifer, who is studying bioinformatics and computational biomedicine at Oregon Health and Science University, was born with arthrogryposis multiplex congenita (AMC). The condition presents as joint contractures in the body and affects approximately one in 3,000 individuals in the United States (source).

“Arthrogryposis is an underserved condition in terms of research that is being done to determine the roots of the condition,” said Jennifer. “Right now, there aren’t any pharmacological treatments for AMC that make changes on the molecular and cellular level.” Jennifer moved from the Bay Area in California to Portland in order to work with Ronen Schweitzer, M.D. Dr. Schweitzer, director of research at the Portland Shriners Hospital, is a leader in tendon development and tendon biology research. Since AMC is a condition defined by joint contractures, the study of tendon development is incredibly applicable to the study of arthrogryposis.

Originally, Jennifer attended college to study accounting because she enjoyed working with numbers. However, after she graduated and began working as an accountant, she was miserable. “I desperately wanted to do something that would allow me to make a positive impact on the world,” said Jennifer. She ended up going back to school and happened to enroll in a human biology class. “I discovered that I loved learning how the human body works,” said Jennifer. “It seemed to provide that meaning in my life that I was looking for!”

As Jennifer continued with her education, she started to connect the dots between what she was learning and her own condition. She decided that she wanted to spend more time researching AMC, and she began contacting researchers to express interest in shadowing them. One of the obstacles that she was experiencing is that, due to her condition, she cannot work in a lab in a traditional way due to her joint contractures. When communicating with researchers, she voiced her interest in finding solutions and adaptations that would help her participate in the research world. She received a lack of response and even some unsupportive feedback, including researchers who encouraged her to explore a different career

Finally, Jennifer met someone at Stanford who helped her brainstorm different ways that she could be involved in the research field, and she ended up majoring in bioinformatics, which is primarily involves working on a computer. The more she learned, the more she saw how applicable bioinformatics is to AMC. She participated in two internships at Stanford and one internship at University of California San Francisco. Jennifer eventually learned about Dr. Schweitzer and had a video call with him to learn more about his work, and the rest is history!

“I was really struck by Jennifer’s positive energy and how fiercely independent she is,” said Dr. Schweitzer. He explained that the Shriners Hospitals for Children system is the ideal place for Jennifer to be conducting her research. “Very little is known about arthrogryposis,” he said. “While it’s a rare condition, we currently have 3,000 active patients who have arthrogryposis. While she’s here, she’ll be in an environment that will allow her to work in both clinical and fundamental research, and have access to the larger system.”

“I love it here at the Portland Shriners Hospital! Dr. Schweitzer is so supportive of me,” said Jennifer. When asked what her goal is in focusing on AMC, she said she hopes to find better treatments for the condition that will increase joint and muscle function. "It would be amazing to see the day when AMC can be cured. For now, we will work on understanding AMC and developing treatments to reduce the effects of this condition."