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!
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