Rett Syndrome is a devastating condition. Striking previously healthy children at around the age of 12-18 months, it robs them of their abilities to walk, talk or use their hands purposefully. Over time, it affects their breathing, their swallowing, their digestion and every single aspect of their health and development. They become locked in, trapped by a body that cannot obey signals from their brain and reliant on others for every basic need.
However, change is within reach. In 2010 Rett Syndrome was proven to be reversible in the lab. Later that year, Reverse Rett was founded and since then the landscape for those living with Rett Syndrome has changed immensely. We have gone from a time when a diagnosis was a life sentence, without approved treatments, human clinical trials or sense of hope, to a time when transformative treatments are within reach and a brighter future is on the horizon for all those living with Rett Syndrome. There has never been a more exciting time to get involved.
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