THE BRAIN RECOVERY PROJECT
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Mission Statement
We enhance the lives of children who need neurosurgery to treat medication-resistant epilepsy by empowering their families with research, support services, and impactful programs before and after surgery.
About This Cause
Each year, over 40,000 children in the U.S. alone are diagnosed with epilepsy - more than juvenile diabetes and cerebral palsy combined. Most of these children will find seizure control with anti-epileptic drugs, but approximately 9,000 per year will have drug-resistant epilepsy. Seizures in childhood can be extremely dangerous, particularly if they are resistant to drugs. Epilepsy, especially if it begins in infancy, can be catastrophic to a child’s development. Drug-resistant seizures are associated with severe disability and developmental delay in infants and young children. For example, approximately 31% of children with infantile spasms will die and another 45% will have an IQ below 68. If anti-epileptic drugs fail to control a child’s seizures, then epilepsy surgery can be an option for these children. Epilepsy surgery is any neurosurgery where parts of the brain are stimulated, destroyed, removed, or disconnected in an attempt to stop or slow down seizures. Pediatric epilepsy surgery has nearly doubled in the U.S. in the past decade; however, parents and caretakers often do not have many places to turn when considering the procedure. And after surgery, there is little information about how to help children reach their full potential after surgery. OUR PROGRAMS • RESEARCH Since 2011, through direct funding, recruitment, and data collection support, we have supported over $800,000 in research to better understand the functional implications of large epilepsy surgeries. Last year, our research captured the attention of the national media when highlighted in a New York Times article about how the brain can rewire itself after having a hemisphere removed in childhood. (See https://nyti.ms/2s1Dizl) In early 2019 we launched the Global Pediatric Epilepsy Surgery Registry, the only patient-powered registry tracking the developmental progress of children who undergo or have been evaluated for pediatric epilepsy surgery. In July of 2019, we convened the first-ever stakeholder meeting of patients, clinicians, and researchers to identify the research gaps that exist after major resective and disconnective pediatric epilepsy surgeries. Funded in large part by a Eugene Washington Engagement Award from the Patient-Centered Outcomes Research Institute, this patient-centered initiative has resulted in a new research consortium and agreement to collectively publish a best practices guide for all aligned clinicians and professionals who serve children after epilepsy surgery. • INFORMATION AND RESOURCES Evidence-Base Knowledge Development and Dissemination: We are a trusted provider of information and resources, and we host trainings for parents, educators, therapists, and clinicians to advance the understanding of immediate and permanent side effects of surgery and how they impact a child’s ability to learn and engage in community life. Parent Empowerment Through Informed Decision-Making: Information about when a child’s seizures are drug resistant, the risks and dangers of seizures, and the pros and cons of the various brain surgeries to stop them. Also helps parents, educators, therapists, and clinicians understand through webinars and research-based information the medical, cognitive, and behavioral challenges a child may have through life, as well as guide parents through educational, financial, and life care issues. This includes downloadable printable, research-based guides addressing how epilepsy surgery affects vision, auditory processing, education, as well as induce hydrocephalus after surgery, have been downloaded over 6,900 times in 2019. Biennial Pediatric Epilepsy Surgery Family & Professional Conferences: Since 2015, the Alliance has been the sole organizer and host of our family and professional conferences. Over the past five years, over 1,500 parents and caregivers have attended our conference. Video-recorded sessions from our conferences are available online and have been viewed over 57,000 times, with some individual sessions exceeding 6,000 views. Over 150 clinicians, researchers, educators, and aligned professionals from respected institutions have spoken at our conferences. According to post-evaluation surveys from the 2019 conference, more than 96% of conference attendees reported they would recommend the conference to another parent. 98% of respondents reported that the information gathered at the conference better equipped them with knowledge and information that will help advocate for their child. The family and professional conferences continue to be a critical component of our overall parent and broader education efforts. Teach Advocacy Skills to Parents and Train School Teams: The vast majority of children diagnosed with medication-resistant seizures require special education or accommodations in school. Navigating the maze of state and federal laws and regulations that govern special education can be complicated and challenging for parents. Through our free online webinars and guides, we walk parents through the steps to build a child’s Individual Education Plan (IEP) after epilepsy surgery. Parents learn about the different types of epilepsy surgeries, effective advocacy skills, procedural safeguards, evaluations and assessments, proper identification, the importance of the present levels of academic achievement and functional performance, goals, and placement. School Training: We offer free school training to help the school teams understand how brain surgery to stop seizures impacts a child’s learning and functioning in school. Over a dozen free school trainings have been offered to schools where children who have had epilepsy surgery attend. •FINANCIAL ASSISTANCE Surgical Evaluation Travel Scholarship: There are many barriers to a timely referral to an evaluation to see whether a child can have epilepsy surgery. One barrier is monetary - many families struggling with financial issues find it difficult to obtain a surgical evaluation at a hospital far from home. “Dreams for Danny” provides up to $1,000 in approved travel funds for scholarship awardees.