Welcome Letter to Parents

Hello and welcome to the DDX3X Foundation! If your child has just been diagnosed with DDX3X Syndrome, please know you have landed in a place of people who understand. You may be feeling scared or overwhelmed, or maybe you’re feeling grateful to finally have an answer to so many questions. Either way, you have found your tribe and we are here for you.

As moms of daughters with DDX3X Syndrome, we created this international foundation to provide you with the support you need to navigate this journey. This website and our Facebook group are intended to explain what we know about DDX3X mutations and to provide a sense of community, no matter where in the world you are located.

Our Recently Diagnosed page provides some key information to get you started, but there is a lot more to learn in the Facebook group’s timeline. If you are interested in something specific, do a quick search in the timeline as it may have been covered before. If you don’t find what you are looking for, then post your question to the group. Additionally, a simple and comprehensive summary of DDX3X Syndrome is available in this document from RareChromo.org.

We often hear from parents after receiving a diagnosis asking what they can do to help; a great way to start is to join our Facebook group, geneDDX3X, to connect with our larger community.

Thanks to our generous supporters, we are proud to have funded research at a number of top institutions in the United States and look forward to expanding our reach further into Europe. Learn more about the research we have funded here.

Lastly, each fall we host a Family Day to bring everyone in our community together to network and hear from researchers in the field about the latest developments on DDX3X. We would love to have you join us at our next gathering!

Welcome to the tribe – we are so glad you are here!

Warmly,

Beth and Liz

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