Chatting with Haley and Poppy
Big Step Forward for Non-verbal Children
We finally have a team behind us. Notre Dame University has stepped up to the plate to address the needs of all children who have severe neurodevelopmental disabilities. The University Neuro Team has been formed and is led by our principal investigator Jarek Nabrzyski, Director, Center for Research Computing, Concurrent Professor in the Department of Computer Science and Engineering; Michal Kosiedowski, Director of Future Internet Services at the Poznan Supercomputing Networking Center, an Institute within the Polish Academy of Sciences. Michal was the PI for a groundbreaking development of a Translator for the non-verbal language of children who have profound learning and multiple disabilities; and last but not least is the Chatting with Haley and Poppy team.
Our non-verbal children are customarily labeled profoundly learning disabled, as if they have nothing to say. However they are one of many categories of people deprived of speech due to developmental factors, accident, illness, mental health or aging.
Our Neuro Tech Team has completed a draft of a concept paper to address this need. Fundamentally it is an Information Communication Technology project designed to bring the research into the home, school or institution. It will allow for transmission of any form of physiological or neural data 24/7/365. Our goal is to present our plan to the National Institute of Health (NIH) in January 2024.
It will require unification and synchronization of many scientific fields, which heretofore has not been the case. In the normal course of communication, we rely not only on words but gestures, body movement, posture, tone of the utterance, physiological condition, social setting, environmental conditions, and social status to determine intent and meaning. These various modalities of nonverbal communication are performed by all of us as a suite and their use is idiosyncratic and influenced by cultural factors.
This project is a unique long term developmental effort requiring many institutions. It will also require installation of equipment into homes, schools and institutions. We have already had discussions with very large internet provider and they are eager to assist.
Thanks for your support over the years. A special shout out goes to The International Foundation for CDKL5 Research and LouLou Foundation who co-hosted a Patient-Focused Drug Development Meeting (PFDD) in November 2019 for the U.S. Food and Drug Administration (FDA). There,families made it quite clear their need for communication with their non-verbal children was a number one priority.
Haley and Poppy