University of Michigan pediatric neurologist Vivian Cheung made a name for herself studying rare genetic diseases, and in 2008 — when she was on the faculty at the University of Pennsylvania — was hired as a Howard Hughes Medical Institute investigator, an honor for which she received $1 million a year over the next 12 years to further her research. But after Cheung herself developed a genetic condition so rare it doesn’t have an official name, causing her to start losing her vision, HHMI decided to stop funding her.
In a lawsuit filed in January 2020, Cheung, who is now 55, alleged the institute discriminated against her because of her disability. She has difficulty maintaining her balance at times in addition to progressive vision loss, but she claims HHMI refused to provide accommodations that would enable her to continue her research, and pushed her to leave. “I was asked to take a medical retirement,” Cheung told STAT. “I felt that I was being judged for having a disability.”