That’ll teach me!
It’s the dog days of summer–and beautiful days they have been–and I was thinking maybe I could take a week off between blog posts…not this past week–big mistake…
Amazing activity in the epilepsy world this week, I’m thrilled to say. In no particular order of importance, here are some of the most noteworthy events:
- Last Sunday night, CNN chief medical correspondent Dr. Sanjay Gupta’s documentary “WEED” aired, and opened up some very provocative conversations about “medical marijuana” (or CBD as I’d prefer we call it). Amazing story of a child whose life was turned around miraculously. More research and more conversation is needed.
- The first report has been published from the NIH Epilepsy Phenome Genome Project (EPGP) and Epi4K project; researchers have identified two new genes and implicated 25 distinct mutations in severe childhood onset epilepsies. An international collaboration between researchers at more than 40 institutions across three continents led to the identification of these genes in Infantile Spasms and Lennox-Gastaut Syndrome, two of the most severe epilepsy syndromes. Launched earlier this year, our Infantile Spasms Research Initiative seeks to find a cure for IS. This recent discovery could have a profound impact on that. With these newly identified “driver genes” in IS, we can now study how they cause spasms and look for personalized treatments.
- Our own Associate Research Director Dr. Tracy Dixon-Salazar was featured on NPR’s Here and Now program along with Dr. David Goldstein, director of the Duke Center for Human Genome Variation. They discussed the exciting new genetics researched (mentioned above) published in the scientific journal Nature.
- Here in Illinois, Governor Pat Quinn signed Illinois Senate Bill 1226-the Danny Stanton SUDEP Act-into law. The law requires medical examiners and coroners to include an inquiry about a history of epilepsy and seizures as part of a standard autopsy, and, if an instance of Sudden Unexpected Death in Epilepsy (SUDEP) is determined in Illinois, to report it to a national registry. Terrific work by the Danny Did Foundation, who drove this legislation.
- CURE is thrilled to announce our new Scientific Advisory Board (SAB)! A warm welcome to the wonderful people below for graciously lending their time and expertise to CURE:
Anne Anderson, MD – Baylor College of Medicine
Douglas Coulter, PhD – University of Pennsylvania
Vicky Holets Whittemore, PhD – NINDS Liaison
Jong Rho, MD – University of Calgary
Harald Sontheimer, PhD – University of Alabama Birmingham
Stay tuned next week for the announcement of our 2013 Challenge, Pediatric, Prevention of Acquired Epilepsy and SUDEP grants! This is the research your loyal support and donations enable us to invest in. We can’t wait to get the work going, and see the breakthroughs and progress that result!