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）：神经元蜡样脂褐素沉积症（NCL，巴顿病）是一组至少有十种致命的遗传性疾病，主要影响儿童和年轻人。近年来，至少在八种形式的 NCL 中发现了遗传缺陷，这使得人们在了解这些疾病的发病机制和设计实验疗法方面取得了进展。关于神经元蜡质脂褐质沉着症（巴顿病）的国际大会大约每两年举行一次，是唯一一个汇集了对这类严重致残疾病的基础科学和临床护理感兴趣的人士的论坛。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保持最高标准的科学和 临床演示，但同时以世界各地的 NCL 家庭、神经科医生、儿科医生和护理人员可以访问的格式呈现最佳临床标准的信息。这是第一次在美洲中等收入国家举行的大会，将科学知识和社会效益扩展到新的地区。科学委员会对主题进行了优先排序，并邀请了未从事巴顿病研究但在该领域做出重大贡献的演讲者以及该领域的专家就他们最近发表的在该领域的研究发表演讲。此外，初级研究者和学生演讲将从提交的摘要中选出，确保年轻研究者和 NCL 领域的新人有机会在本次国际会议上发言。会议分为六个主要会议和两个研讨会，每个会议都将由各个领域的领导者关键人物共同主持和领导。这些主持人将在与家长组织会议的联合会议上以易于理解的方式总结并介绍主要调查结果。家长组织会议将与科学会议同时举行，其计划由这些组织制定和领导，这些组织正在筹集资金以支持来自世界各地的家庭参加。会议场地的选择是为了提供无障碍的校内住宿和现代化的会议设施，最大限度地增加在靠近主要国际和国内交通枢纽的地点进行互动的机会。此外， 会议期间，受过培训的工作人员将向家庭提供支持和照顾。与往年一样，该申请旨在资助美国科学家参加 NCL2014 会议，重点是支持研究生和早期博士后科学家，而不是更成熟的研究人员。