Welcome to the latest TREAT-NMD newsletter. This edition includes details of a DMD animal models report published in Neuromuscular Disorders, news of the Action Duchenne 2009 conference, and a call for experts on care standards for Nemaline and other Congenital Myopathies to work on a consensus document. Although there has been rapid progress in the molecular genetic understanding of how these diseases develop, medical care in this area has not enjoyed such progression. The collaboration between TREAT-NMD, the Nemaline Consortium and US experts aims to address this issue.
Details of the CMD Standards of Care meeting in Brussels are also featured. With this meeting scheduled to take place immediately before our own International Conference, Brussels is definitely the place to be in November 2009! Don't forget to submit your abstract before 17 July.
Best wishes from,
Katie, Volker, Hanns, Steve, Emma, Rachel, Samantha and Michael,
the Newcastle TREAT-NMD team
09-11 Jul 2009 "Therapeutic Targets in CMD", Emory University, Atlanta, Georgia
09-12 Sept 2009 IDMC-7 International Myotonic Dystrophy Consortium
09-12 Sept 2009 14th International Congress of the World Muscle Society, Geneva, Switzerland
21-23 Sept 2009 Muscle Study Group Annual Meeting, Buffalo, New York
25-26 Sept 2009 SMA 'at the Eve of the Cure' conference, Warsaw, Poland
05-06 Oct 2009 6th UK SMA Research Conference, Edinburgh, UK
23-24 Oct 2009 Action Duchenne International Conference Holiday Inn Bloomsbury London
17-19 Nov 2009 TREAT-NMD / NIH International Conference
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Seeking Experts in Standard of Care for Nemaline and other Congenital MyopathiesExperts are required to join an inter-continental collaboration between TREAT-NMD, the Nemaline Consortium and US experts to form a Committee for the Standard of Care for Nemaline and other Congenital Myopathies, specifically Central-Core, Multi-Minicore and Myotubular Myopathy. There has been rapid progress in the understanding of the molecular genetics and pathogenesis of Nemaline and other congenital myopathies in recent years. However, the level of the medical care for this group of patients has not matched the progress of the current advances in medical technology. The aim is to form a committee to look into this issue and to achieve a consensus for the standard of care for this group of patients.  MORE > |
CMD Standard of Care ConferenceImmediately prior to the TREAT-NMD international conference this November in Brussels, a conference on CMD care standards will take place. The CMD Standard of Care (SOC) initiative was launched at a recent TREAT-NMD sponsored meeting in April 2009, bringing together international CMD experts, Cure CMD (a patient advocacy group) and TREAT-NMD staff with participation by Sharon Hesterlee (MDA). The meeting recognized the critical need to address SOC as part of the larger effort to promote CMD clinical trial readiness, decreasing variability in CMD medical practice patterns, evaluating CMD diagnostics in a variety of international settings and delineating the CMD medical care issues with an emphasis on a multidisciplinary approach.  MORE > |
Pre-clinical testing for DMD - workshop report now available onlineKanneboyina Nagaraju and Raffaella Willmann on behalf of the TREAT-NMD Network and the Wellstone Muscular Dystrophy Cooperative Research Network have produced a report from the Pre-Clinical Testing for Duchenne Dystrophy Workshops entitled "Developing standard procedures for murine and canine efficacy studies of DMD therapeutics". This report has now been accepted by Neuromuscular Disorders and is available online.  MORE > |
Action Duchenne International ConferenceThe annual Action Duchenne International Conference is scheduled for 23 - 24 October 2009. This two day conference will be held in the Holiday Inn, Bloomsbury London. This is the 7th annual conference from Action Duchenne and will include top researchers and experts in Duchenne. Here you will have the chance to meet with other families and learn of all the up to date research and medical care as well as practical workshops on physiotherapy, learning and behaviour and much more. A special TREAT-NMD session will include speakers and workshops on the latest international initiatives in Duchenne. More details will be available shortly from www.actionduchenne.org  MORE > |
