Infantile Spasms Action Network
We are proud members of the Infantile Spasms Action Network (ISAN): a collaborative network of over 25 national and international entities dedicated to raising awareness for infantile spasms – a catastrophic form of epilepsy if not stopped early. In 2018, we produced this video on behalf of ISAN which has been viewed over 400,000 times on Facebook.
Epilepsy Leadership Council
The Epilepsy Leadership Council (ELC) is collaborative effort across several stakeholder communities (government, advocacy groups, and physicians) with a common goal of improving the lives of those living with epilepsy. The ELC selected The Brain Recovery Project to be one of its several members representing it as part of the Epilepsy Benchmarks Stewards group. Along with the American Epilepsy Foundation and the Epilepsy Foundation of America, the Benchmarks Committee is charged with reflecting the research priorities in epilepsy that represent the entire community. We are tasked with giving the patient voice to the National Institute of Neurological Disorders and Stroke (NINDS) as they redraft the epilepsy benchmarks for future research which include benchmarks for epilepsy surgery. The new benchmarks will be finalized the summer of 2020 in time for the Curing the Epilepsies Conference and reflect priorities for research toward clinically meaningful advances in understanding and treating the epilepsies.
Epilepsy Learning Health System – Community Engagement Core
The Epilepsy Learning Health System is a new initiative by the Epilepsy Foundation to create a learning health system around epilepsy – where science, informatics, incentives, and culture are aligned for continuous improvement and innovation, with best practices seamless embedded in the care process, patients and families active participants in all elements, and new knowledge captures as an integral by-product of the care experience. The Brain Recovery Project was selected to be part of the ELHS Community Engagement Core. We will use this platform to bring the voice of our community to the ELHS and address timely referral to a surgical evaluation, neurosurgeon expertise, improving our understand of implications of surgery, and issues related to acute and chronic recovery across the lifespan.
We were asked by the Child Neurology Foundation and Global Genes to be a founding member of Thrive For Rare – a collaborative initiative to engage, embrace, and drive change in the rare disease community. Together with other founding members, we drafted the THRIVE manifesto; this list of values serves to elevate the rare disease community as a whole and help ensure efficient progress towards an inclusive, altruistic goal of creating a better tomorrow for the children, adults, caregivers, clinicians, and fellow advocacy partners engaged in our community.
Rare Epilepsies Network
We are members of the Rare Epilepsy Network (REN), a collaboration between the Epilepsy Foundation, RTI International, Columbia University and many different organizations that represent patients with a rare syndrome or disorder that is associated with epilepsy or seizures. We’re working with REN to better understand the behavioral implications of many epilepsies and, as part of the REN Steering Committee, to establish criteria for potential Centers of Excellence for the rare epilepsies.