"Researchers at Montefiore Medical Center have identified, in a pilot study published in the April 2012 edition of Pediatric Neurology, that children with Rett Syndrome, who cannot speak or use their hands to communicate and therefore were thought to be unable to understand and process information, do in fact exhibit meaningful visual search whereby they can process and prioritize information. This leads researchers to believe that conventional testing is not robust enough and underestimates the patients’ cognitive abilities."



In 2014, we launched Rett University in partnership with Susan Norwell, a world-renowned Rett Syndrome education and communication specialist. It is an international e-learning platform specifically designed for parents, educators and therapists of Rett Syndrome students. Experienced professionals share their cutting-edge knowledge on how to support students with Rett Syndrome and guide them to their highest levels of academic, physical and personal achievement. 

At Rett University you will: 

  • help your student/child learn to read and write
  • develop real communication skills
  • learn strategies for sensory regulation
  • learn where to start when initially diagnosed to build communication and appropriate expectations
  • develop effective appropriate IEP goals

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I am not only a volunteer and donor, I am also a mother of a Rett girl. This organization is more than inspiring! They made me want to do more than just wish and pray for a cure, but rather become part of finding one! They make you feel so welcomed and understood, as if they have known you all your life. 

— Tarah Miller