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About the Foundation

The journey of the CHARGE Syndrome Foundation began in 1982, in Columbia, Missouri, with the Deaf-Blind Project in the Division of Genetics, University of Missouri. A group of dedicated professionals got to work putting together valuable informational materials for families and parents who were dealing with the challenge of caring for their children with CHARGE syndrome.

Since those early days 34 years ago, the Foundation has grown significantly, spreading its impact across the US as well as over 25 countries. Its board and advisors are comprised of parents and professionals who volunteer their efforts pro bono towards the cause. This allows the Foundation to channel over 90% of funds raised towards directly benefiting individuals and families. The Foundation, including its biennial conference, is an indispensable resource for many of its members – a place to look for information, support, research and access to other parents and professionals.

We know what we do matters, because it helps individuals with CHARGE and their families deal with one of the biggest challenges of their lives. To date, the Foundation has sponsored more than 950 individuals with CHARGE to attend conference, 18 pilot research grants, as well as a dedicated Director of Outreach who spends 600 hours a year directly supporting families. For more about what we do, please see our IMPACT report.

The CHARGE Syndrome Foundation, Inc. is a 501(c)(3) charitable organization that is governed by a Board of volunteers composed of up to 12 members. The primary goals of the Foundation include: growing our outreach and support programs; increasing our knowledge base; promoting awareness; building networks and partnerships; and investing in leading-edge research.


Learn more about our Family Assistance Program (FAP), created in the Spring of 2020 in response to increased needs of families related to the COVID-19 pandemic. Since the Program’s inception, the Foundation has supported hundreds of families across the Untied States.





Learn more about one of the major activities of the Foundation—our biennial international conference.





Since 2012, the Foundation has sponsored eighteen research grants and is looking to continue sponsoring grants looking at new biomedical research into the etiology, genetic and molecular mechanisms and treatment of CHARGE syndrome or new research into clinical and medical diagnosis and treatment of CHARGE syndrome. Read more


Get Involved


Interested in becoming involved? There are many ways to become involved and support the work of the Foundation. Read more




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