I recently received an email from the CHARGE Syndrome Foundation, which is trying to provide information to people who might need it. Based on demographics, there should be a least a few readers of this blog who know somebody with CHARGE syndrome, so as a public service, I'm linking to the website and including some additional information below.
CHARGE syndrome is a relatively rare (1 per 9-10,000 births, according to the Foundation website) pattern of congenital birth defects. It usually appears in families without any history of the syndrome or similar syndromes. There are a number of physical problems (often heart defects, breathing problems, and swallowing problems) as well as nervous system problems such as malfunction of cranial nerves, blindness and deafness (the exact constellation of impairments differs from person to person).
Given the blindness and deafness, along with Autistic-like behaviors, it should not be surprising that there are consequences for language and communication. The forthcoming CHARGE Syndrome book (full disclosure: I am a co-author on one of the chapters in said book, and my father is the lead editor of the book) has a chapter (not by me) reviewing some recent work on communicative abilities in people with CHARGE. For very good reason, that work is focused on communication, rather than structural properties of language. Of course, I am interested in how or whether particular components of language are impacted by the syndrome (similar to how the linguistic consequences of Autism have been studied in some depth, telling us both more about Autism and about language), but I don't know of any relevant work having been done.
For those who want to know more about CHARGE, I suggest going to the Charge Foundation website. One place to find some of the recent research on CHARGE is to check out the publications page of the CHARGE Lab at Central Michigan University.
CHARGE syndrome is a relatively rare (1 per 9-10,000 births, according to the Foundation website) pattern of congenital birth defects. It usually appears in families without any history of the syndrome or similar syndromes. There are a number of physical problems (often heart defects, breathing problems, and swallowing problems) as well as nervous system problems such as malfunction of cranial nerves, blindness and deafness (the exact constellation of impairments differs from person to person).
Given the blindness and deafness, along with Autistic-like behaviors, it should not be surprising that there are consequences for language and communication. The forthcoming CHARGE Syndrome book (full disclosure: I am a co-author on one of the chapters in said book, and my father is the lead editor of the book) has a chapter (not by me) reviewing some recent work on communicative abilities in people with CHARGE. For very good reason, that work is focused on communication, rather than structural properties of language. Of course, I am interested in how or whether particular components of language are impacted by the syndrome (similar to how the linguistic consequences of Autism have been studied in some depth, telling us both more about Autism and about language), but I don't know of any relevant work having been done.
For those who want to know more about CHARGE, I suggest going to the Charge Foundation website. One place to find some of the recent research on CHARGE is to check out the publications page of the CHARGE Lab at Central Michigan University.
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