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, including infantile spasms, 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 pediatric epilepsy surgery – and how to improve them – especially large resective procedures like hemispherectomy, hemispherotomy, lobectomy, temporoparietaloccipital disconnection, and corpus callosotomy, and to provide resources to families and 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.