The neuronal ceroid lipofuscinoses (NCLs, Batten disease) are a group of at least ten fatal inherited diseases that mostly affected children and young adults. In recent years the genetic defect has been identified in at least 8 forms of NCL and this has lead to advances in understanding the pathogenesis of these disorders and in devising experimental therapies. An International Congress on Neuronal Ceroid Lipofuscinosis (Batten disease) has been held approximately every two years and is the only forum brings together those with interests in basic science and clinical care for this group of profoundly disabling diseases. The next of these meetings, NCL2012 (www.ncl2012.org), will be held at the Royal Holloway London, UK in March 2012, but adopting a new and distinctive format by running together with the first worldwide meeting of Batten disease Parent Organizations.
The aim i s to allow presentation and discussion of academic and clinical research at the highest level, but also provide a forum for parents to meet and access the latest information in an accessible format. As the pace of scientific research accelerates and we move closer to translating these approaches into the clinic, there is a pressing need to communicate these advances clearly and effectively to those with the most vested interest in their outcome. The talks for presentation at NCL2012 will be selected by the scientific organizing committee entirely from submitted abstracts. This will ensure that young investigators and those new to the NCL field will have the same opportunities to be chosen to present as those investigators who are well established in the field. The conference will be split into seven main sessions each of which will be chaired and lead by key people who are leaders in each area. These chairs will also summarize and present the main findings in an accessible fashion in a joint session with the Parent's Organization Conference. This will run in parallel to the Scientific Conference, with a program set and led by these organizations, which are raising funds to support the attendance of families from around the world. The conference venue is chosen to provide accessible on-campus accommodation and modern conference facilities, maximizing the opportunities for interaction at a site that is within easy reach of major international and national transport links As in previous years, this application is made to fund US based scientists to attend the NCL2012 meeting, with an emphasis to be placed upon supporting graduate students and early postdoctoral scientists rather than more established investigators.
This conference will bring together for the first time researchers who study a fatal childhood disease, the clinicians who care for these children, and non-profit organizations run by these children's parents. This will provide a unique forum to promote communication between these groups, discuss the latest advances in research and clinical care, and provide a greater understanding of their implications.