The SON gene holds the key — the community holds the heart.
A global community of families, researchers, and supporters turning discovery into hope for every child with ZTTK.
~500
Known Patients Worldwide
40+
Countries Represented
~$300,000
Annual Research Budget
7
Active Research Projects
Three Pillars
Community
Find your community. Resources, ambassadors, and families who understand.
Explore COMMUNITY →Research
Follow the science. From gene discovery to gene therapy — track every milestone.
Explore RESEARCH →Just Received a Diagnosis?
You are not alone. Thousands of families have walked this path — and found each other. Start here for the resources, community, and hope you need right now.
Start Here →The Path to a Breakthrough
Where science stands — and where we're headed.
ZTTK Syndrome Identified
SON gene variant linked to syndrome by Tokita et al. — the discovery paper that named the condition.
Natural History Study — 52 Patients
Dingemans et al. published the most comprehensive ZTTK dataset, establishing the phenotypic spectrum across 52 individuals.
iPSC + JAX Mouse Models
Patient-derived iPSC neuronal models established. Jackson Laboratory mouse model collaboration launched via Ahn Lab partnership.
Biomarker Assays + Treatment Screen
ELISA biomarker assay development and initial small molecule repurposing screen underway.
First Therapy Candidate
First small molecule or gene therapy candidate identified from preclinical proof-of-concept work.
ZTTK Syndrome Identified
SON gene variant linked to syndrome by Tokita et al. — the discovery paper that named the condition.
Natural History Study — 52 Patients
Dingemans et al. published the most comprehensive ZTTK dataset, establishing the phenotypic spectrum across 52 individuals.
iPSC + JAX Mouse Models
Patient-derived iPSC neuronal models established. Jackson Laboratory mouse model collaboration launched via Ahn Lab partnership.
Biomarker Assays + Treatment Screen
ELISA biomarker assay development and initial small molecule repurposing screen underway.
First Therapy Candidate
First small molecule or gene therapy candidate identified from preclinical proof-of-concept work.
Community Happenings
Songs for SonShines — Live in Nashville, September 23
Millennial Divas: a tribute night of late-’90s and 2000s hits from Nashville’s independent artists, plus a silent auction — every ticket and bid supports ZTTK research and families. Doors 6:00 PM, Analog at Hutton Hotel.
Details & Tickets
Free Live Webinar: What Nobody Tells You About IEPs
We’re partnering with Citizen Health on this free live webinar with IEP Specialist Staci Zimmerman — your questions, and the ones you didn’t know you had. Sunday, October 4 at 7:00 PM ET, online.
Register Here (opens in a new tab)
A New Home for the ZTTK Community
Our new website is live — built for the nearly 500 ZTTK families worldwide, and everyone working alongside them toward a breakthrough.
Read more
Your Gift Funds Life-Changing Research
Every dollar the SON-Shine Foundation raises goes directly to funding research, uniting families, and advancing the science of ZTTK syndrome.
Research Partners
