14th International NCL Congress: Supporting US Based Scientists

第 14 届国际 NCL 大会：支持美国科学家

• 批准号: 8784544
• 负责人: DAVID A. PEARCE
• 金额: $ 2.25万
• 依托单位: SANFORD RESEARCH/USD
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-07-01 至 2015-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8784544
• 关键词: Affect; Americas; Area; Argentina; Basic Science; Caregivers; Caring; Child; Child Care; Childhood; Clinical; Clinical Research; Communication; Communities; Congresses; Country; Diagnosis; Disease; Educational workshop; Ensure; Europe; Family; Fund Raising; Funding; Goals; Income; Inherited; International; Investigational Therapies; Joints; Knowledge; Lead; Link; Low income; Mutation; Neurologist; Neuronal Ceroid-Lipofuscinosis; Nonprofit Organizations; Parents; Pathogenesis; Publishing; Research; Research Personnel; Running; Scientist; Side; Site; Spielmeyer-Vogt Disease; Students; Time; Training; Translational Research; Work; abstracting; base; clinical care; disabling disease; graduate student; high standard; interest; meetings; member; pediatrician; posters; programs; public health relevance; social; symposium; web site; young adult

DESCRIPTION (provided by applicant): 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.

描述（由申请人提供）：神经元样脂褐质病（NCLs， Batten病）是一组至少十种致命的遗传性疾病，主要影响儿童和年轻人。近年来，遗传缺陷已在至少8种NCL中被确定，这导致了对这些疾病发病机制的理解和设计实验性治疗的进展。神经元样脂褐细胞病（巴顿病）国际大会大约每两年举行一次，是唯一一个将对这组严重致残疾病的基础科学和临床护理感兴趣的人聚集在一起的论坛。下一次会议NCL2014 （http://nclcordoba.com/website/）将于2014年10月22日至26日在阿根廷科尔多瓦喜来登科尔多瓦酒店举行。这也吸引了来自世界高、中、低收入国家的巴顿病家长组织。我们的目标是提供一个会议，将保留最高标准的科学和