Our mission is simple: We help children reach their full potential after brain surgery to stop seizures
Each year, approximately 45,000 children in the United States are diagnosed with epilepsy. For approximately 40% of these children, the seizures are drug-resistant. If the seizures can be localized to part or one side of the brain, then surgery to remove the lesion causing the seizures, or larger procedures where part of the brain is disconnected or removed, is an option to stop the epilepsy.
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.
Our Programs Include
- New research: By invitation only, we initiate and fund research to better understand functional outcomes after resective and disconnective epilepsy surgeries and how to maximize those outcomes. Some of our research is ongoing, including:
- Robocamp – the world’s first robotics-assisted intensive rehabilitation program provided in a camp-like environment for children with disabilities. This research collaboration with Rancho Research Institute and the Rancho Los Amigos National Rehabilitation Center is a fun, engaging program where children after hemispherectomy surgery can be with kids “just like” them;
- Translational research: We review and summarize existing published research on drug-resistant epilepsy, epilepsy surgeries, seizure control, and functional outcomes, so that parents understand their child’s options and gaps in research are identified. We are a clearinghouse for research-based, high quality resources about pediatric epilepsy surgery, including how to maximize functional outcomes. In 2017, we will launch the first global pediatric epilepsy surgery registry to help researchers track functional outcomes across the lifespan.
- Innovation: We have several innovative projects that will help children after epilepsy surgery. These include:
- The Frog Arm – A 3D printed assistive hand device to help with rough grasp.
- The Airy Arm – A 3D printed hand exoskeleton for children with hemiparesis. Still in its design phases, this collaboration with the e-NABLE community will hopefully provide children with hemiparesis with an affordable option for an assistive hand exoskeleton;
- Homonymous hemianopsia simulator – still in the prototype phase, this smartphone app will simulate homonymous hemianopsia in 3D virtual reality environment to provide parents and anyone working with a child after hemispherectomy, occipital lobectomy, or temporoparietaloccipital disconnection, with the an accurate depiction of how homonymous hemianopsia affects a child’s ability to see, navigate their environment, read, and otherwise process vision in a fast-paced world.
- Educational Advocacy and Training: Our special education advocacy program provides free advocacy assistance for parents navigating the maze of special education. Additionally, our training specialists can meet with the child’s education team to explain the effects of various epilepsy surgeries.
- Parent Education Initiative: Our website, publications, and conferences provide parents with the tools they need to help their children succeed. Our family conferences provide parent education as well as opportunities to make personal connections with other families. Our professional meetings and scientific conferences for neuro-professionals drive future research endeavors and help us understand functional outcomes.
We have collaborated with, initiated research at, or provided grants to: