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| A New Voice For Silent VictimsA Few New Voices Are Given To Angelman Syndrome. Actress/Model Sarah Painter and Her Mother Gina Speak Out For Those Who Can't.
By definition: "Angelman syndrome (pron.: /ˈeɪndʒəlmə AS is a classic example of genomic imprinting in that it is caused by deletion or inactivation of genes on the maternally inherited chromosome 15 while the paternal copy, which may be of normal sequence, is imprinted and therefore silenced. The sister syndrome, Prader-Willi syndrome, is caused by a similar loss of paternally inherited genes and maternal imprinting. AS is named after a British pediatrician, Dr. Harry Angelman, who first described the syndrome in 1965. An older, alternative term for AS, Happy Puppet Syndrome, is generally considered pejorative and stigmatizing so it is no longer the accepted term, though it is sometimes still used as an informal term of diagnosis. People with AS are sometimes known as "angels", both because of the syndrome's name and because of their youthful, happy appearance." Imagine having a child that seems perfectly normal yet cannot speak a word. The Painter's live with this plight every day. This is not just a charity cause for them as they themselves have a child who suffers from this most devastating disorder. Will, who is a happy go lucky little guy lacks the ability to talk, yet is high functioning and can easily intermingle with those around him. He just does not have a voice. The Painter's have vowed that they will do whatever it takes to make sure that Will's voice can be heard someday. Experimental drugs and testing are on the horizon but is very expensive and not yet approved by the FDA. This is why Sarah and her mother are on a pilgrimage to help set up a non profit that will be capable of accepting donations and other services that will help families of these little angels. It seems that we never really get involved as much as we should, but when we do, don't you think it should be a voice that can be heard? Let us help the smallest of these by giving to the Angelman Syndrome today. Everyone should have a voice! The Painter's Angelman Syndrome Charity will be up and running soon. Details will be announced at a later time. For more information please contact the AMG at 615-469-1595. End
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