Annual Newsletter 2013
A Letter From Our Founder, Dr. Orrin Devinsky
It is hard to recognize dramatic change when each day looks like the next. A parent rarely sees their child grow while those who see the child only twice a year are struck by the rapid development. In medicine, a common error is to compare the current MRI with one from a year prior. They may appear unchanged. Yet change is easily detected if the images from five years ago are used as the comparison.
Science, medicine and health are shifting at unprecedented rates. Cures are vanishingly rare, but big changes surround us.
For epilepsy, the past year was a very big one. The first report from the Institute of Medicine (IOM) was released – Epilepsy Across the Spectrum: Promoting Health and Understanding - and FACES was part of the process. The North American SUDEP Registry was launched out of NYU as an international collaboration with seed funding from FACES. The Epilepsy Phenome Genome Project (EPGP) had its first scientific papers accepted, including one that was recently accepted at Nature, one of science’s two premier journals. This paper identified 10 new epilepsy genes – a staggering achievement – and discovered causes for epilepsy in 15% of patients with severe childhood-onset epilepsies. EPGP started with FACES funding and has been a relentless effort of its two leaders – our co-director Ruben Kuzniecky and our close friend and colleague at UCSF, Dan Lowenstein. We have just started to mine the data from EPGP and the followup genetic study, EPI-4k. There will be many more discoveries that will not only identify new genetic causes and therapeutic targets, but also help redefine how we think about many epilepsies.