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History

History 2017-08-01T22:35:05+00:00
  • A young child about a year old lies on a light blue rug with white stars on it. He is grabbing his right foot with his left hand and has a white blanket draped across his body. He is thin with big brown eyes and brown hair, looks directly at the camera, and has a slight smile. He is the son of the founders of The Brain Recovery Project and was born with total hemimegalencephaly.

The Brain Recovery Project was formed in May of 2011 by Brad and Monika Jones.  Brad and Monika’s son Henry has undergone three epilepsy surgeries –  modified lateral hemispherotomy, revision, and then anatomical hemispherectomy – for intractable epilepsy caused by total, syndromic hemimegalencephaly.

After his hemispherotomy at the age of three months old, Brad and Monika grew increasingly frustrated by the lack of information in the medical and therapy community about how to best rehabilitate their child.  Would he learn to walk? Would he talk?  How would they get him to reach his full potential?  When no clear answers were provided, they decided to form this non-profit organization.

Since our inception in 2011, our primary focus has been funding research to better understand functional outcomes after hemispherectomy and how to improve those outcomes.  In November of 2016, our board of directors approved our new initiative: to expand our research to better understand functional outcomes after all resective and disconnective childhood epilepsy surgeries, including hemispherectomy, hemispherotomy, lobectomy, temporoparietaloccipital disconnection, and corpus callosotomy, and to provide resources to children affected by these procedures.

The Brain Recovery Project received its non-profit status from the Internal Revenue Service in August of 2011.  We are a 501(c)(3) not-for-profit corporation.

 

The Jones family in 2009

 

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