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 eight forms of NCL and this has led to advances in understanding the pathogenesis of these disorders and in devising experimental therapies. An International Congress on Neuronal Ceroid Lipofuscinosis (Batten disease) is 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, NCL2014 (http://nclcordoba.com/website/), will be held at the Sheraton Cordoba Hotel in Cordoba, Argentina, from October 22-26, 2014. This also appeals to Batten Disease Parent Organizations from high, middle and low income countries of the world. Our goal is to provide a meeting that will retain the highest standard of scientific and clinical presentations, but to present at the same time information of the best clinical standards in a format that is accessible to NCL families, neurologists, pediatricians and caregivers around the world. It is first Congress to be held in a middle income country of the Americas, expanding the scientific knowledge and the social benefits to a new region. The scientific committee has prioritized topics and has invited both speakers not working on Batten disease that make major contributions in this area and experts in field whom will speak on their most recently published research in this area. Additionally, junior investigator and student talks will be selected from submitted abstracts, ensuring that young investigators and those new to the NCL field have an opportunity to present at this international conference. The conference is split into six main sessions and two workshops, each of which will be co-moderated and lead by key people who are leaders in each area. These moderators will summarize and present the main findings in an accessible fashion in a joint session with the Parent's Organization Conference. The Parent's Organization Conference 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. Additionally, support and care by trained staff will be made available to families during the conference. As in previous years, this application is made to fund US based scientists to attend the NCL2014 meeting, with an emphasis to be placed upon supporting graduate students and early postdoctoral scientists rather than more established investigators.

Public Health Relevance

This conference will bring together 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 conference provides 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.

Agency
National Institute of Health (NIH)
Institute
National Institute of Neurological Disorders and Stroke (NINDS)
Type
Conference (R13)
Project #
1R13NS086297-01A1
Application #
8784544
Study Section
National Institute of Neurological Disorders and Stroke Initial Review Group (NSD)
Program Officer
Morris, Jill A
Project Start
2014-07-01
Project End
2015-06-30
Budget Start
2014-07-01
Budget End
2015-06-30
Support Year
1
Fiscal Year
2014
Total Cost
Indirect Cost
Name
Sanford Research/Usd
Department
Type
DUNS #
City
Sioux Falls
State
SD
Country
United States
Zip Code
57104