Month: February 2019

Speech and Language SETBP1 Study!

Speech and Language SETBP1 Study!

by haley / On Posted in Research

A new SETBP1 disorder study just launched!! If you or your child have a SETBP1 difference, please consider signing up for the Murdoch Children’s Research Institute’s research project into speech and language skills in individuals with SETBP1 variants: an international study. The project aims to improve overall understanding of speech and language abilities in individuals […]

Newly Diagnosed?

Newly Diagnosed?

by haley / On Posted in Resources

Welcome to our SETBP1 Community!! My name is Haley Oyler and I am the president and founder of SETBP1 Society. I am the mother of a beautiful, happy, social young boy who has SETBP1-HD. My family received his diagnosed days before his 5th birthday in early 2016 after several years of testing and searching for […]