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 answers to our son’s multitude of challenges. Our son is the motivation for forming SETBP1 Society. Since then, our family has connected with many SETBP1 families and feel the joy and warmth from having a community!

The hope of our organization is to provide support for families impacted by SETBP1-HD (also referred to as SETBP1 haploinsufficiency disorder) or SETBP1-related disorders and to share current research with our small, but growing community. We additionally are driven to promote discussion and research in order to learn more about the SETBP1 gene and SETBP1-HD with the ultimate goal of finding treatment(s) for individuals impacted by SETBP1-HD.

If your child was recently diagnosed, you may understandably be feeling overwhelmed, relieved and/or disappointed about the diagnosis, lost, isolated, and a whole mix of feelings. We recommend you start at our Common Questions page. Some want to immerse themselves in the research, while others need time to process the information. Take your time. We understand that each person processes this new information at their own pace.

If you would like more information about SETBP1-HD, our Resources page has quite a bit of helpful information including our SETBP1-HD Guide, our SETBP1-HD Information Sheet, and videos from our SETBP1 family conferences.

Our organization supports an international community. Joining our SETBP1 Facebook Support Group is one of the best ways to connect with families. Completing our SETBP1 Contact Registry helps ensure SETBP1 Society can share information about research, conferences, and other events with you and is the first step for gaining access to the private Facebook Support group. You can also check out the SETBP1 Community Map to see where other individuals with SETBP1-HD live and/or to add your child.

Advocating for our children with special needs is one of the biggest gifts we can give them. We are glad you found us! We are so happy you found us! You are not alone! If you would like to chat on Facebook Chat or Zoom, I am also available to hear your story and connect!

Many thanks,
Haley Oyler