Meet Mousumi Bose
Mousumi Bose is the mother of 3 and an associate professor at Montclair State University. Her first son, Ilan, was born with Zellweger spectrum disorder, a rare, terminal, genetic disorder. As a result of her caregiver experience with Ilan, Mousumi re-focused her career goals to study rare pediatric diseases.
Over the last decade, Mousumi has published peer-review research on the role of the family caregiver in the management of rare pediatric disorders, as well as multiple literature reviews on Zellweger spectrum disorder. In 2021, Mousumi wrote a guidebook for caregivers of patients with rare diseases and wrote an op-ed published in NJ.com about the experience of special needs families during the height of the Covid-19 pandemic. She has also written and spoken extensively about her personal experience with Ilan in various public forums. Currently,
Mousumi lives in Maplewood with her partner, Andrew, and Ilan’s younger brothers, Etash and Kiran. She loves spending time with her family, and her hobbies include cooking, taking kickboxing classes, and karaoke. Mousumi is passionate about keeping Ilan’s memory alive through her work and her storytelling.
Links:
The Circle of Care Guidebook for Caregivers of Children With Rare and/or Serious Illnesses, 2021.
Opinion: On Rare Disease Day, check in on special needs families. Star Ledger. February 2021
