John S.
Board of Directors, Fundrasing chair at Mowat-Wilson Syndrome Foundation - Las Vegas, NV, US
John S.'s Colleagues at Mowat-Wilson Syndrome Foundation
John S.'s Contact Details
N/A
Barre, Vermont
Mowat-Wilson Syndrome Foundation
John S.'s Company Details
Founded in 2013, our mission is to enhance the lives of people affected by Mowat-Wilson Syndrome by providing family support, raising awareness, and supporting research and education.What is Mowat-Wilson Syndrome?Mowat-Wilson Syndrome is associated with cognitive impairment and with multiple health defects caused by a genetic mutation or deletion on the ZEB2 gene. Major signs of this rare genetic disorder include dis- tinctive facial features, intellectual disability, delayed development, intestinal disorders, seizures, congen- ital heart disease, agenesis of the corpus callosum, male genital abnormalities (hypospadias), and major expressive language difficulty.Most children with Mowat-Wilson Syndrome are non-verbal. Speech is absent or severely impaired. Many people with this condition can understand others' speech and some use sign language to communicate. If speech develops, it is delayed until mid-childhood or later. Children with Mowat-Wilson Syndrome also have delayed development of motor skills such as sitting, standing, and walking. Although many different medical issues have been associated with Mowat- Wilson Syndrome, not every individual with this condition has all of these features. Children with Mowat-Wilson Syndrome typically have friendly and happy personalities, despite their many difficulties. Children born with Mowat-Wilson Syndrome will need intense medical attention and personal care throughout their entire lives.It is important to note that Mowat-Wilson Syndrome was discovered only recently (defined in 1998), and we are still learning about what physical, behavioral, and developmental issues are associated with the syndrome. We invite you to learn more at www.mowat- wilson.org. Join Us!Facebook: https://www.facebook.com/pages/Mowat-Wilson-Syndrome-Founda-tion/1406543249597421Make a Donation Support the Mowat-Wilson Syndrome Foundation by donating at www. mowat-wilson.org