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arianem

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Review for International Rett Syndrome Association, Cincinnati, OH, USA

Rating: 5 stars  

We've all heard the term "It takes a village". Well when you have a child with a disability and especially a rare one, you are desperate to find that "village" to help you navigate your new, unexpected life. Rettsyndrome.org is that "village". This organization has helped me and my family and my daughter who has Rett syndrome find a new, amazing family, our Rett family. This is a community of other families who have the same struggles as we do and are excited and eager to help. It is a community of scientist who see our Rett angels as people who just want to get better and live a more full life. They are compassionate and are working incredibly hard to help find a cure for our Angels. It is a community of educators that know how smart and able a person with Rett syndrome is and will do what it takes to make sure other educators have the knowledge and the tools to effectively education our Rett Angels. It is a community of therapists available to work with, guide and encourage all those that work with a person who has Rett to help make for a better life. So you can see, Rettsyndrome.org is my Village. I don't know what i would do without them.

Role:  Volunteer