What is Bainbridge-Ropers Syndrome?
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What is Bainbridge-Ropers Syndrome?
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YouTubeASXL Rare Research Endowment Foundation
The Calder family has two kids - a nonverbal 14-year-old daughter named Della with a rare genetic condition called Bainbridge-Ropers Syndrome, and her 16-year-old brother Archer, who noticed that she didn't have easy, affordable access to communication tools. Archer dreamed of being able to communicate easily with his own sister - and he found a way to help other families struggling with the same communication gaps in the process. In January 2020, he coded an app called Freespeech, a tool that a
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The Calder family has two kids - a nonverbal 14-year-old daughter na…
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A Boy Named Coop on Instagram: "Coop has Bainbridge-Ropers Syndrome. Bainbridge-Ropers Syndrome is a neurodevelopmental disorder caused by a change (mutation) in the ASXL3 gene. This change usually happens randomly but in some rare cases, it may be inherited. 🌍 We think about 500 people worldwide are currently diagnosed, making Bainbridge-Ropers Syndrome an ultra-rare disorder. We believe many more individuals may be living with Bainbridge-Ropers Syndrome but remain undiagnosed due to limited a
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