About Us
Community Happenings
The latest from the ZTTK SON-Shine Foundation — research milestones, community stories, and announcements.
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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Inaugural Global Conference Brings Together 180+ Attendees
The first-ever ZTTK Global Community Conference united families, researchers, and clinicians for two days of science and connection.
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ZTTK Foundation Presents at Rare Disease Day Events
Executive Director Ada Lio and Scientific Director Nathan Guo presented at the 10th Annual Rare Disease Day Event and the MassBio Rare Disease Day Forum.
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Foundation Receives $800,000 CZI Rare As One Grant
The Chan Zuckerberg Initiative awarded the ZTTK SON-Shine Foundation an $800,000 five-year grant through its Rare As One project.
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Boston Globe Profiles ZTTK Foundation's Mission
The Boston Globe published a feature story highlighting the ZTTK community's efforts to accelerate understanding and treatment of this ultra-rare syndrome.
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