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Rachel Horne

Vice President/Secretary

Rachel’s son was diagnosed in August of 2017 in Charleston, South Carolina.  Initially, the pediatrician thought Wells’ developmental delays and joyful disposition were a result of Williams Syndrome.  The PPM1D diagnosis was discovered using the Whole Exome Sequencing test, but there were still so many questions that could not be answered at that time.  Rachel now finds connecting with other families helps her to remain hopeful and she knows working together will help doctors learn more about JdVS.  Using her own experiences to build the foundation has become her passion.  Wells is doing wonderfully, even though it can be consuming navigating the world of special education and IEP’s.

Rachel has a Bachelor of Science in Early Childhood Education.  She has taught kindergarten and preschool, currently responsible for a four year old classroom in a small faith based program.  Her family keeps her extremely busy!  They can usually be found riding bikes, at the beach, reading, or playing with neighbors.