Four-year-old Noa Greenwood is an inspiration for families facing Canavan disease, a rare genetic disorder. In June 2022, she became the third child to receive a promising gene therapy for the disease, developed by researchers at UMass Chan Medical School. This episode explores Noa’s story, her parents' commitment to rare disease awareness and the hope innovative treatments provides.
“She is doing things that we never expected her to do.”
What is Canavan disease?
Canavan is a progressive and rare genetic disorder affecting the central nervous system, muscles and eyes. Symptoms in infancy may include increased head size, weakness, low muscle tone and loss of head control. The condition is caused by mutations in the ASPA gene.
Lee and Noa Greenwood exchange high-fives. Photo: Bryan Goodchild
Lori Greenwood and Noa smile at each other. Photo: Faith Ninivaggi
Noa walks on her own at the Neurological and Physical Abilitation Center (NAPA) in Waltham. Video: Bryan Goodchild
Noa pulls a rope during an occupational therapy session at NAPA with occupational therapy Christine DiChiara, OTR/L.Video: Bryan Goodchild
Noa stacks toys with her physical therapist Micayla Pedrick, DPT, at NAPA. Photo: Bryan Goodchild
Terence R. Flotte, MD; Guangping Gao, PhD; Lori, Lee and Noa Greenwood; and Dominic Gessler, MD,PhD’20, at a visit to UMass Chan. Photo: Kaylee Pugliese
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Learn more about Canavan disease:
National Tay-Sachs & Allied Diseases Alliance, Inc.
Horae Gene Therapy Center at UMass Chan Medical School
Share Noa’s story using the following hashtags:
#RareDiseasesRealStories, #RareDiseases, #podcast
