About us
Welcome to the Tribe
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.
Formed by parents of children with DDX3X Syndrome, we understand the challenges associated with raising a child with DDX3X Syndrome. Many of the families affected by DDX3X Syndrome went years without knowing the cause of their child’s delays. We exist to connect and support you.
This website and our Facebook group are intended to provide support to you as you navigate this journey. Our Recently Diagnosed page provides some of the key information to get you started, but there is a lot more to learn in the Facebook group’s timeline. If you are interested in something specific, do a quick search in the timeline first. Then post your question if you don’t find what you are looking for.
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.
The DDX3X Foundation’s Impact
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DDX3X Syndrome accounts for an estimated 1-3% of intellectual disabilities in females
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769 known cases across 50 countries
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312 children currently in the patient registry
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Raised over $1.4M
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Awarded over $300,000 in research grants
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Hosted 8 scientific conferences and family gatherings
OUR GOALS
Where we see the DDX3X Foundation going in the future:
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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Ashley Chastain
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Jena Loffert
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Sarah DiSalvatore
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Colleen Fahey
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Sara Golden
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Teresa Hoelle
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Dmitri Litvinov
Chairperson
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BrieAnne Rader
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Jamie Snead
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Kate Tambone
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 $450,000 as well as two years of professional development to continue building the foundation.
Our Partners
