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.
fewer than 1,000
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 →Community Happenings
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.
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Research Milestone Update 2026
Progress update on ZTTK research — our funded mouse model and natural history study projects continue to advance.
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ZTTK Foundation Rings the NYSE Opening Bell
ZTTK families and affected children rang the opening bell at the New York Stock Exchange, bringing rare disease visibility to the global financial stage.
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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
