由Joshua Frase Foundation(JFF)所贊助的教育會議,即將透過電話會議系統接受全球病友以及醫療人士參與,JFF一直致力於贊助肌小管病變的研究,所以這次也會有他們主要的贊助研究者向大家報告研究的現況,並接受部分線路現場發問. The Joshua Frase Foundation (JFF) hosts it’s first ever educational teleconference series this fall (2006)! To the best of our knowledge, this is the first free, open-access conference ever held in the USA on myotubular/centronuclear myopathy (MTM/CNM)! Don’t miss out! This series is designed primarily for families affected by MTM/CNM, but is also open to physicians, researchers, health care professionals and others who would like to learn more about the disease. Mark your calendars now, and please join us on the following dates to listen to these informative speakers: Sunday, September 17 at 7:30 PM to 8:30 PM Eastern Time, USA Dr. Alan Beggs, PhD will speak on current issues in myotubular/centronuclear myopathy research. Dr. Beggs is an Associate Professor of Pediatrics at Harvard Medical School , where he runs a world renowned research lab in the Genetics Division at Children’s Hospital Boston. Dr. Beggs is one of the USA’s top researchers on MTM/CNM. He leads a group of physicians and scientists dedicated to understanding and curing MTM/CNM and other congenital myopathies. This discussion will include research, not clinical medical advice. Sunday, September 24 at 7:30 PM to 8:30 PM Eastern Time, USA Elizabeth Taylor, M.S., Genetic Counselor and Research Study Coordinator at Children’s Hospital Boston, will speak on the topic of “The genetics of centronuclear/myotubular myopathy: what we know and what we think we know.” Sunday, October 15 at 7:30 PM to 8:30 PM Eastern Time, USA Each call will begin promptly at 7:30 PM. You may join the conference up to 10 minutes prior to the call. There are up to 24 spots for callers to both listen and talk during the call. Once the first 24 spots are filled, the call will be opened to up to 75 listen-only participants.
我會嘗試撥入並把全程錄下, 希望可以把重要內容翻成中文再放上來!
Dr. Alan Beggs的錄音
Educational Teleconference Series
Dr. John Bach, MD, will speak on prevention of medical complications in myotubular/centronuclear myopathy. Dr. Bach is based at New Jersey Medical School, where he is a Professor of Physical Medicine and Rehabilitation (PM&R), Vice-Chairman of PM&R, Professor of Neurosciences, Director of Research and Associate Medical Director of the Department of PM&R, Co-Director of the MDA Clinic at University Hospital, and Medical Director of the Center for Noninvasive Mechanical Ventilation Alternatives and Pulmonary Rehabilitation. Dr. Bach is internationally recognized for his ground-breaking work in noninvasive mechanical ventilation.
公告版位
- Sep 16 Sat 2006 14:02
史上第一次的肌小管病變 電話會議
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