ZTTK News
ZTTK SON-SHINE FOUNDATION RANG the NYSE OPENING BELL FOR ZTTK
NEW YORK, NY., August 29, 2025 -- In a once-in-a-lifetime moment, ZTTK families—including affected children—joined the SON-Shine Foundation to ring the opening bell on August 29th at the New York Stock Exchange, shining a national spotlight on our rare disease and the need for continued investment in cures.
Hear directly from Board Members in our NYSE interviews:
Link to Shannon and Ada’s Interview about our foundation and research progress. Click below for videos!
2025 Feb Rare Disease Day Month Events
During Rare Disease Month in Feb, our Executive Director Ada Lio and Scientific Director Nathan Guo were honored to share their story and the ZTTK research roadmap at the 10th Annual Rare Disease Day Event, “An Era of Innovation for Rare Diseases,” hosted by The Termeer Foundation in collaboration with the Broad Institute of MIT and Harvard‘s Ladders to Cures Scientific Accelerator. Their keynote speech showcased our foundation’s mission on one of science’s biggest stages.
Watch their keynote here (1:02:35)
They also spoke at the 2025 Rare Disease Day Forum at MassBio, a leading platform spotlighting innovation in the diagnosis and treatment of rare and ultra-rare conditions. Their participation helped raise awareness of ZTTK and highlighted the urgent need for continued investment in research and care.
Watch news coverage here.
ZTTK SON-SHINE FOUNDATION AWARDED $800,000 GRANT AS PART OF CHAN ZUCKERBERG INITIATIVE RARE AS ONE PROJECT
NEW YORK, NY., Oct. 1, 2024 -- The ZTTK SON-Shine Foundation, a 501(c)(3) nonprofit organization dedicated to those affected by ZTTK syndrome, is delighted to announce that it has been selected by the Chan Zuckerberg Initiative (CZI) to receive an $800,000 five-year grant as part of CZI’s Rare As One project.
Learn more here
Boston Globe
“What we’re trying to do is bend the time curve by working hard with scientists and other collaborators in this ecosystem to accelerate the understanding [of ZTTK].”
— Parent of ZTTK patient
Read about one of our ZTTK families’ story in the Boston Globe here
Email Ada Lio at alio@zttksonshinefoundation.org if you are interested in writing a story about ZTTK Syndrome