The New Guide

family photo, mom, dad, sister, brother with MECP2 duplication syndrome

We're here for you.

Guide Cover - New Parents

The New Guide

We created this guide to give new parents the information we wish we had received when our children were first diagnosed. We want you to know that there is hope and joy on this journey. 

This free guide will help you adapt to your new world. It covers:

  • Genetics of MECP2D and testing
  • Spectrum of symptoms
  • Therapies and treatments
  • Emergency services 
  • Education and government services
  • Daily life
  • Family and self care
  • Travel