ZTTK News

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