Chatting with Haley and Poppy
Editor’s Note: Chatting with Haley and Poppy is a platform to advocate for children who are non verbal and diagnosed with developmental and epileptic encephalopathy. In ensuing posts we will suggest published articles in neuroimaging journals with the potential to reveal the preserved cognitive abilities of these children. The recipients of this mail are either current correspondents or professionals in the field. By all means suggest articles or make comments by email or phone listed below.
I am leading an initiative for the International Foundation of CDKL5 Research that focuses on an underserved population. This population is comprised of children without motor or speech responses required by standardized assessments. Lacking the means of expression and no valid tools to measure their intelligence, the conclusion is too often drawn that there is no intelligence. Consequently there is no reseach on the preserved cognitive function of these children.
The aversion to research in this population is clearly evident in autism research. “Ninety-four (94%) of all participants identified as being on the autism spectrum in the studies reviewed did not have Intellectual Disability. Eight out of ten studies demonstrated selection bias against participants with ID”. (Russel, Mnady et al).
To initiate research to study the preserved cognitive functions and establish biomarkers for such I have put together a network, consisting of the International Foundation of CDKL5 Research and the National Center of Adaptive Neurotechnologies, (NCAN), BCI4KIDS in Calgary and Augmentative and Alternative Communication Translation (AACT) Lab at University of Nebraska. All have expressed an interest in studying this population and their preserved cognitive function.
I am fortunate to have the support of the National Center of Adaptive Neurotechnologies, (NCAN), leaders in BCI technology and Tim Benke, a clinician and researcher who is a leader and specialist in children with developmental and epileptic encephalopathy.
Finally, I share that I am quite fortunate to be the primary caregiver to a delightful girl of 16 years whom I have the privilege of homeschooling. She has a diagnosis of CDKL5. As my colleagues remind me I have my own lab with an n of (1).
Ed Fennell 838 218 4337