The Pediatric Epilepsy Research Foundation (PERF) was established in 2004 as a not-for-profit foundation to support research in pediatric epilepsy and other pediatric neurologic conditions.
In 1994, Roy Elterman, MD (Dallas Pediatric Neurology Associates) and Don Shields, MD (UCLA) began an investigator initiated study of vigabatrin for the treatment of infantile spasms. A national collaborative group, the Vigabatrin Infantile Spasms Study Group (VISSG) was set up to allow child neurologists access to vigabatrin for patients with infantile spasms until it was approved by the FDA. Medication was obtained from Aventis Pharmaceuticals and a single-blind, high-dose/low-dose study was approved by the FDA. Aventis later decided not to seek approval for vigabatrin in the US. A start-up company, Ovation Pharmaceuticals, eventually purchased US rights for vigabatrin with the plan to seek FDA approval. The VISSG data proved to be essential for FDA approval. Because the VISSG pivotal study was not included in the purchase from Aventis, Ovation agreed to pay royalties for the data. It was decided that the highest and best use of that money would be to establish the Pediatric Epilepsy Research Foundation as a not-for-profit foundation to support pediatric neurologic research.
PERF funded its first grant in 2010.
Enhance the quality of life of children with epilepsy and/or other neurologic disorders. To accomplish this mission, the Foundation, in particular seeks to support: