In 2016, three mothers exchanged contact information following the initial diagnosis of a newly discovered syndrome that affected the SON gene in their daughters and created the SONshine Gene Denovo Facebook Support Group for families of children with Zhu-Tokita-Takenouchi-Kim Syndrome. The page was created to provide support and resources for the newly discovered syndrome to our geographically dispersed ZTTK families. Members of the group began collaborating with each other on the comparisons of their pregnancies, medical histories, body system issues, therapies, medications and all things related to the similarities of our children with this diagnosis. 

As parents of some of the first children diagnosed with the syndrome and participants in the first studies, they were pioneers on a mission. The ZTTK SON-Shine Foundation was formed in 2021 by, and for, families of individuals with ZTTK syndrome.

We offer hope, acceptance, and empowerment through advocacy, education and awareness as we guide individuals with ZTTK syndrome through life. Together, we create a worldwide community composed of and dedicated to individuals with ZTTK syndrome and those who love them. We have dedicated ourselves to gathering as much information as possible and creating opportunities for our children to grow and learn like any other neuro-typical child – so that each may realize their potential to live healthy, self-directed, productive, and meaningful lives.  In order to achieve this vision, individuals with ZTTK syndrome must be fully included in educational, work, and community settings. 

We recognize that individuals with ZTTK have sometimes been excluded at school, in the work place, and in their communities.  We also recognize that supports and services often focus on what individuals with ZTTK cannot do, rather than their strengths, gifts, and interests.

The ZTTK SON-Shine Foundation upholds the following positions on inclusion. We believe that: 

• everyone benefits when individuals with ZTTK are meaningfully included in educational, work, and community settings 

• individuals with ZTTK should receive all necessary supports and services to fully participate in their family lives, communities, and society as a whole

• high expectations should be the norm, and that individuals with ZTTK and their families should decide how they best learn, work, and enjoy social settings and pursue those options through advocacy for their children

• “inclusion” is not one-size-fits-all, and will look different for each family based on each individual’s desires and needs

• inclusion creates a sense of belonging in society, meaningful relationships, and opportunities to achieve dreams

We also honor our mission by:

• providing information and emotional support to individuals with characteristics of ZTTK Syndrome, their families, and the professionals who work with them

• developing programs and services to help build strengths and meet challenges from early childhood through adulthood

• increasing public awareness and understanding of ZTTK Syndrome

• encouraging and supporting research into a wide range of issues related to ZTTK Syndrome