Our Story

IDefine is a nonprofit organization that exists to provide a central community for families affected by Kleefstra Syndrome (KS). We are here to share information, collaborate for advocacy, and pool resources to support life-changing treatment and intervention. Founded in 2020 by a group of US-based parents seeking better answers for their children and families living with a KS diagnosis, IDefine’s volunteers have worked to build connections between existing KS communities and health professionals, inviting collaboration and fueling research for innovative treatments for those affected by this rare genetic condition.

IDefine’s approach to advocacy and organizing is focused on investing in research and building medical expertise to improve treatment options and care, working toward a cure for Kleefstra Syndrome as well as other Intellectual Disabilities.

Core Values

IDefine was created to bring about the future we know is possible for our children and others living with Intellectual Disabilities – a future in which the ones we love have the tools they need to define their own path. Our core values guide each action we take in our journey to living in this reality.

We are defining a new future.
We believe a better future exists. We adhere to the wisdom of Nelson Mandela: “It always seems impossible until it is done.”

We enjoy the journey.
We build relationships with gratitude, laughter, and camaraderie.  We embrace challenges.  We celebrate the victories.

We are all in.
We are 100% committed to getting the results we want. We operate with eyes wide open. We are consumed with learning and applying what we learn, 24 hours a day, 7 days a week, 365 days a year.

We are relentlessly collaborative.
We are driven to find the answers. We encourage open conversation. We don’t know strangers. 

We are unshakeable.
We remain “calm in the pocket” when things get tough. With laser focus, we make the uncomfortable comfortable.

We display raw authenticity.
What you see is what you get. We are real with no agendas other than to help others. We practice what we preach.