From the Foundation


Burning White Sutton Questions?

When we first found out that our son had a POGZ mutation, we had a thousand questions. At the time, we knew nothing about genetics or the intricacies of White Sutton. It was early days, and we were quickly frustrated by the lack of forums where we could pose them, and the rarity with which we got actual, concrete answers.

We hope to help solve that problem with this website. That said, there are sure to be many questions that haven’t occurred to us, since everyone’s situation is a little different and every individual with WHSUS seems to have a unique set of challenges. We want to begin the process of addressing that. To do so, we’re working on creating an “FAQ” section on this website. We are also working to gather additional topics to write articles about. That’s where you come in: we need your questions! You can submit them by replying to this article below, or by emailing me if you’d prefer that your question remain anonymous. We’ll add your questions to our list, and as we notice trends developing we will add relevant questions to our FAQs. We’ll also begin writing new content to address some of these queries, all of which will be vetted by our medical advisory board (of which Dr. Sutton is a member).

Thanks for helping to grow the White Sutton Syndrome community and its body of knowledge!

2 Responses

  1. Andi Galusha

    I am helping a patient who has WSS, but the entire family speaks Spanish. What resources are available for them? Thank you in advance,

    1. Josh Couch

      Andi, at this point we don’t provide translation services. In the past, we have used both Facebook Messenger and Google Translate to bridge any language gaps.

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