Understanding Minimally Verbal Individuals With Machine Learning | Kristy Johnson

What if we could understand and talk to minimally verbal individuals thanks to machine learning?

Today I have the luck to meet the pure energy of Kristy Johnson. After a PhD at the MIT Media Lab, Kristy is now working at Boston Children’s Hospital, but she’s also a mother, and her first child has a terrible ultrarare disease called MEF2C haploinsufficiency. Kristy is a versatile scientist and she has devoted her research to minimally verbal and non-verbal children to help them communicate.

Kristy and I discuss her personal story, the several research fields she has touched, and her current research in population genetics to help patients with rare diseases, which, taken together, are not that rare. We are lucky to have her very personal understanding to guide us through the difficulties of a child who does not reach conventional milestones: “now what?”. Kristy and I discuss the need of high personalization: for example, even if much later than other children, learning a first word for a child with a rare disease, strongly delayed, is an outstanding success. But how can we motivate individuals with rare and widely diverse neurological disorders to pursue learning? How can we make sure we understand them and they understand us? Kristy explains several directions she has taken during the years, and we discuss how hard it is to understand if an individual is improving following some intervention, given the lack of a “control”, untreated population. Kristy has devoted herself to collecting vocalizations from minimally verbal MV* individuals through an app, having parents to label the emotion of their child associated with those vocalizations. She and her colleagues have then remarkably put together a machine learning model that can label such vocalization (Commalla Project). I’ll stop here, you’ll have to listen to the episode to know more! Looking forward to seeing what Kristy will invent in the next few years, but I am sure that the neurological disease community will greatly benefit from her work!

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RESOURCES:

Kristy’s MIT Page: https://www.media.mit.edu/people/ktj/overview/

MIT Media Lab: https://www.media.mit.edu/

Commalla: https://commallamit.wixsite.com/commalla

About MEF2C haploinsufficiency: https://rarediseases.org/rare-diseases/mef2c-deficiency/?filter=ovr-ds-resources