About us
Recently Diagnosed?
Hello and welcome to the DDX3X Foundation! If your child has just been diagnosed with DDX3X Syndrome, please know you have landed in a place of people who understand. You may be feeling scared or overwhelmed, or maybe you’re feeling grateful to finally have an answer to so many questions. Either way, you have found your tribe and we are here for you.
The DDX3X Foundation is an international nonprofit organization founded in 2015 to aid in the process of finding a treatment or a cure for DDX3X Syndrome. As part of our mission, the foundation will support existing research, education, and treatment programs focused on DDX3X Syndrome. The foundation has three primary functions: support research, connect families, and raise awareness.
Mission
Our mission is to connect families, resources, and the medical community to advance research for a treatment or cure to DDX3X Syndrome. Our ultimate goal is to accelerate brain function in individuals affected by DDX3X Syndrome through advances in cell and gene therapy and pharmaceuticals.
Co-Founders
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Liz Berger
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Beth Buccini
DDX3X Staff
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Chelsey McCarthy
Executive Director
Leadership Advisory Board
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Christine Cardullo
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Ashley Chastain
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Lynsey Curry
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Sarah DiSalvatore
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Colleen Fahey
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Sara Golden
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Paula Hill
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Teresa Hoelle
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BrieAnne Rader
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Candace Sorrentino
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Shelly Sweatt
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Kate Tambone
Scientific Advisory Board Members
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Theresa Strong, Ph.D.
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Wendy Chung, M.D., Ph.D.
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Karlla Brigatti
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Elizabeth Berry-Kravis, M.D., Ph.D.
Rare As One Network Grantee
The DDX3X Foundation is proud to be a Rare As One Network grantee. Funded by the Chan-Zuckerberg Initiative, the overarching goal of the Rare As One project is to support and leverage the power of patients to accelerate research and drive progress against disease. The network is composed of 30 rare disease organizations focused on advancing research. As part of this program we were awarded $600,000 as well as three years of professional development to continue building the foundation.
Our Partners
Research
Since 2015, we have facilitated the acceleration of research of DDX3X gene mutations by increasing our network of researchers and clinicians. Research on DDX3X gene functionality and mutations has accelerated drastically over the last years, largely due to the work of this community.
