The Brain Recovery Project

Stop the delay to surgical evaluation;

Fund research to understand and improve functional (cognitive, education, motor, behavior etc) outcomes after pediatric epilepsy surgery;

Educate stakeholders (e.g. parents, clinicians, educators) about functional outcomes after pediatric epilepsy surgery, and how to improve them, by giving them the information needed to help children after epilepsy surgery throughout the lifespan across all functional domains;

Provide financial assistance to families impacted by epilepsy surgery.

Prepare knowledge translation summaries functional outcomes and therapy interventions; Work with parent advisory board and review social media posts to understand stakeholders’ biggest concerns, misunderstandings, and lack of knowledge re functional outcomes and interventions; Identify gaps between research and real life situations, parent needs, etc; Develop annual stakeholder survey; Develop rehabilitation programs and camps based on existing research; Advance the body of research on functional outcomes and intervention strategies after various pediatric epilepsy surgeries; assemble scientific advisory board to assist with identifying research focus; assemble parent advisory board to assist with identifying research focus; Identify and initiate new descriptive research on outcomes and interventions; Fund a multi-disciplinary research fellowship; Advance a formal primary stakeholder pediatric epilepsy surgery education program; Develop learning modules which address the ILAE drug-resistant failure standard, all the epilepsy surgeries, including descriptions, pre-testing, risks, acute recovery, functional outcomes, etc.; Create and promote learning stories that show how epilepsy surgery has stopped a child’s epilepsy. Include stories of multiple procedures or unsuccessful seizure outcomes; Regular updates on website, guest blogs, newsletter, email, etc. re new research re efficacy of pediatric epilepsy surgeries; Marketing campaign to stakeholders to increase awareness of our programs/services; Advance an informal primary stakeholder pediatric epilepsy surgery education program; Maintain a robust social media presence to guide parents to the website when queries are made in social media groups; Regular social media posts, shares, etc. re relevant epilepsy surgery articles, papers, etc.; Guest blogs re various epilepsy surgery considerations; Advance a relationship-building campaign with neurosurgeons and neurologists; Identify the top 10-12 pediatric epilepsy surgery facilities in the U.S.; Understand the neurosurgeon’s and neurologist’s pain points (e.g. predicting the future/crystal ball effect); Work with identified facilities to help them understand what we do and how to share our information.

With a professional staff, consultants, and board of directors of pediatric epilepsy surgery directly impacted by pediatric epilepsy surgery, a 20-member community advisory council, an 11-member scientific advisory board, as well as robust financial support from the community we serve, the organization is poised to meet its goals.

To date, the organization has funded over $800,000 in research to understand functional outcomes, and how to improve them, after epilepsy surgery - primarily hemispherectomy, a procedure where half the brain is removed or disconnected to stop drug-resistant seizures;

We have launched the world's first registry to track the developmental trajectory after pediatric epilepsy surgery;

We hold biennial family and professional conferences to educate parents on how to help their child and provide peer support, and to align professionals on the state of research on functional outcomes after surgery. Dozens of conference sessions have been video recorded for parents to view if they are unable to attend a conference;

We have populated our website with robust, deep information about outcomes after various surgeries;

We have provided financial assistance to families who must travel more than 50 miles from home for a surgical evaluation for their child as well those in need of financial aid during the COVID19 pandemic.