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. 

ZTTK syndrome is an ultrarare, neurodevelopmental disorder caused by mutations on the SON gene. ZTTK syndrome can cause varying and widespread symptoms, including motor delay, intellectual disability, speech delay, feeding difficulties, seizures, metabolic abnormalities, and other medical complexities. There are no treatments or cures for ZTTK today.

The ZTTK SON-Shine Foundation was founded in 2021 to improve the understanding, diagnosis, and treatment of ZTTK syndrome. Led by parents of children with ZTTK syndrome, the Foundation is committed to improving the lives of individuals with ZTTK by accelerating research to develop accessible and effective treatments and, ultimately, a cure. It focuses on funding robust science, building strong support systems for the global ZTTK community, and raising awareness about ZTTK syndrome.

"This transformative Rare As One grant will accelerate our efforts to engage our ZTTK community to be at the helm of patient-led research efforts,” said Ada Lio, Board Member of the ZTTK SON-Shine Foundation.  “With the help of this grant, we look forward to bringing patients and clinicians together by hosting a ZTTK SON-Shine Family and Science Conference in 2025. We hope the conference can be an opportunity for ZTTK families to connect with one another and get answers from specialists, all in one place. We also hope that families will in turn contribute their data to enable our research efforts to bring us closer to treatments and, eventually, a cure."

“This Rare As One grant will support continued translation of scientific research to benefit our ZTTK community" said Erin (Eun-Young) Ahn, Ph.D, Professor at the University of Alabama Birmingham, founding Board Member and Lead Researcher of the ZTTK SON-Shine Foundation, and one of the discoverers behind ZTTK syndrome. "We are excited to learn from and partner with other CZI grantees to find efficiencies in understanding and treating ciliopathies and inborn errors of metabolism." 

For more information, please contact:

Shannon Boyle, President and Chair, sboyle@zttk.org

Ada Lio, Secretary and Fundraising Committee Chair, alio@zttk.org

Dr. Erin Ahn, Lead Researcher, eyahn@zttk.org

Nathan Guo, Scientific Director, nguo@zttk.org

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About the ZTTK SON-Shine Foundation

The ZTTK SON-Shine Foundation was founded in 2021 and is led by a group of parents whose children have ZTTK syndrome. ZTTK syndrome is an ultrarare neurodevelopmental disease caused by mutations on the SON gene. SON mutations  can cause a neurodevelopmental disorder that results in motor delay, intellectual disability, speech delay, feeding difficulties, seizures, metabolic abnormalities, and other medical complexities. There are no treatments or cures for ZTTK today. The ZTTK SON-Shine Foundation is committed to improving the lives of individuals with ZTTK by accelerating research to develop accessible and effective treatments and, ultimately, a cure. For more information, please visit www.zttk.org.

About the Chan Zuckerberg Initiative

The Chan Zuckerberg Initiative was founded in 2015 to help solve some of society’s toughest challenges — from eradicating disease and improving education, to addressing the needs of our local communities. Its mission is to build a more inclusive, just, and healthy future for everyone. For more information, please visit www.chanzuckerberg.com.