About Us

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About Us

Our Story

The MECP2 Duplication Foundation is a family founded organization providing support for the MECP2 duplication community. Our foundation began shortly after the diagnosis of our son Everett in 2018. At our families lowest moment we rallied together and made a promise to find a cure for his condition. With the help of his family and community we have made a commitment to help provide the best possible quality of life for Everett and all of those affected by MECP2 duplication syndrome.

Since our beginning we have connected with many other families and developed a foundation board of dedicated individuals made up of affected families, researchers, physicians, politicians, and business leaders. In our first year we successfully supported multiple research projects at the Jan and Dan Neurological Research Center that are positive steps toward developing a treatment for MECP2 duplication syndrome.

Our Mission

It is the mission of the MECP2 Duplication Foundation to provide families diagnosed with information and support, to increase awareness of the disorder, and to provide funding to cutting edge research that will one day treat those affected and enhance their quality of life.