Katie Bailey

I am Katie Bailey and my husband Dan and I live in Olathe Kansas with our 4 children. We have Blake, Remy, Brett and Kayla. Remy is our second born and the reason we have joined this wonderful organization.

Remy was born in 1998 and by 6 days old we had a diagnosis of 18q-. My father had done research while we were getting the diagnosis and still seeing doctors and he found The Registry for us. I made a call shortly after diagnosis and despite it being after office hours, Dr. Jannine Cody answered. That one call changed my feelings of being scared for my daughter’s future and the unknown and feelings of being lost and alone as no doctor really knew much about this syndrome into HOPE! That connecting with another mom (and not just any mom, but THE MOM that started this all), being told about research, being reassured that my daughter would in fact have a future and quality of life is the reason I went to serve as the 18q- Syndrome Coordinator. I felt if I could help just one person and give them hope like Jannine had done for me then it would be all good.

Dan, Remy and I attended our first conference in Colorado when Remy was 3 months old. It was such an incredible experience and we instantly felt that “family reunion” vibe. It has been our goal since then to make summer conferences a priority for our family to go to. Since 1998 we have only missed 3 conferences and it has become the whole families favorite trip to do.

Though I loved serving almost 18 years as the 18q- syndrome coordinator, I have decided to step out of my comfort zone and challenge myself in a new role. I have stepped into the role of Vice President of Member Relations. I am excited and nervous to start this journeyI.