The Greenwood family’s story

The five-year-old daughter of Lee and Lori Greenwood is an inspiration for families facing Canavan disease, a progressive, fatal genetic disease that affects the central nervous system, muscles and eyes.

In June 2022, Noa Greenwood became the third child to receive a gene therapy for Canavan disease based on research developed at UMass Chan Medical School. Today her mother says, “She is doing things that we never expected her to do, ever.”

Our family has seen first-hand of the incredible promise of science. Our daughter was diagnosed with an ultra-rare and fatal brain disease that has no approved therapy. The day she was diagnosed, we were told that there was a new gene therapy clinical trial and that she was a candidate for participation.

Until that moment, families had been told to bring their child home and love them for as long as possible. But we were offered something entirely different: hope.

She was dosed in the trial and our lives were forever changed. She can walk, talk and play with her big sister. She’s funny and naughty and caring and sweet. She’s a student in the public schools and continues to make developmental advances that were unthinkable before gene therapy. She’s getting to live a mostly normal childhood, and all of that is because of the scientific advances developed in the lab. 

We’re forever grateful for this opportunity and love that our kid continues to thrive. 

Lee and Lori Greenwood