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| Last year, when I did a 'search' of Amazon.com ("facial paralysis") I was ASTOUNDED to find there was a book written about MOEBIUS SYNDROME. In reading About Face, by Jonathan Cole, I was deeply appreciative of his interest in what it is like to HAVE Moebius syndrome (the 'lived experience'). Jonathan came to the recent Moebius syndrome onference and shared the research he conducted during the development of his book. Matthew Joffee and I, and all the others with Moebius, were simply glad to share our experiences with Jonathan during our short time together at the conference. It was as though we found a 'soul mate' - someone who was genuinely interested and respectful of the validity of our own experiences. One of our ("our" as in adults with Moebius) dreams is that we can find a way to publish the corporate sum of our experiences and insights in living with such a rare and poorly understood difference. It would certainly be super if someone like Jonathan can meld his knowledge and insights with our experiences. Jonathan also became an "Honorary Moebian" while at the conference! . |
| About Face by Jonathan Cole |
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| Matthew Joffe, me (Sandy Goodwick) and Jonathan Cole ... the 'special effects' are via KIDPIX |