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Research group on neuromuscular diseases
Journal o f the Neurological Sciences, 1982, 54:457458 Elsevier Biomedical Press
457
World Federation of Neurology: Information
RESEARCH GROUP ON NEUROMUSCULAR DISEASES A meeting of the Executive Committee of the Research Group on Neuromuscular Diseases was held in Room 560 of the Kyoto International Conference Hall at 5.30 p.m. on Monday, 21 September 198 I.
(1) ApologiesJbr absence were received from Prof. F. Buchthal, Prof. D. K. Dastur, Prof. J.C. Dreyfus, Dr. W.K. Engel, Prof. R.W. Gilliatt, Prof. B.A. Kakulas, Prof. E. Kugelberg, Dr. E.H. Lambert, Dr. A.T. Milhorat and Prof. S.V. Perry. (2) Present were Prof. Sir John Walton (in the Chair), Prof. R.D. Adams, Prof. C. CoOrs, Prof. J.E. Desmedt, Prof. I. Hausmanowa-Petrusewicz and Prof. T. Tsubaki. Prof. E. Satoyoshi, Prof. M. Ben Hamida and Prof. E. Bharucha (associate members of the Research Group) were also present as observers. (3) Minutes The minutes of the previous meetings of the Research Group held in Montreal on 17 and 20 September 1978 were approved and there were no matters arising from the minutes. (4) E.A.M.D.A. The research report prepared for E.A.M.D.A. by the Chairman/Secretary was also approved, but it was suggested that in future E.A.M.D.A. be invited to send copies of its bi-annual pamphlet to all members of the Executive Committee of the Group. (5) Membership The Committee agreed unanimously to co-opt to its membership Prof. Georges Serratrice of Marseille, France, Prof. Eijiro Satoyoshi of Tokyo, Japan, and Prof. J. G. McLeod of Sydney, Australia. It was also agreed that in the minutes of the meeting of the Executive Committee, as ultimately published in the Journal of Neurological Sciences after approval by the members of the Committee, it should be mentioned formally that additional associate members of the Research Group, especially from developing countries, would be welcomed and an attempt would be made to obtain nominations from such developing countries. Any individual wishing to be considered for associate membership should write to Prof. Sir John Walton giving brief details of his/her qualifications and experience. (6) Vth International Congress on Neuromuscular Diseases The preliminary circular relating to the Vt'h International Congress on Neuromuscular Diseases, which is to be held in Marseille in September 1982, was considered by the Committee and no proposals were made for modification. The Committee noted with great regret that Prof. Carl Pearson of Los Angeles had died recently. A number of minor administrative points of detail relating to the organisation of the Vth International Congress were raised, especially by Prof. Hausmanowa-Petrusewicz, and the Chairman/Secretary, Prof. Sir John Walton, agreed to discuss these issues with Prof. Serratrice and to report individually to Prof. Hausmanowa-Petrusewicz about the outcome of these discussions during the World Congress in Kyoto. (7) Vlth International Congress on Neuromuscular Diseases The Chairman/Secretary reported that he had received a letter from Dr. W.K. Engel proposing that the Vlth International Congress on Neuromuscular Diseases, due to be held in 1986, should be held in the University of Southern California in Los Angeles, U.S.A. The Committee in general recommended this proposal, but pointed out that the final decision relating to the venue of the 1986 Congress could not be made until the next meeting of the Research Group was held during the forthcoming 1982 International Congress on Neuromuscular Diseases which will take place in Marseille in September 1982. In the meantime, the members of the Executive Committee wished to make it clear that other nominations of potential venues for the 1986 Congress would be considered, provided such nominations were received by the Chairman/Secretary not later than 30 June 1982. A further meeting 0022-510X/82/0000-0000/$02.75 © Elsevier Biomedical Press
458 of the Executive Committee of the Research Group would be held during the Marseille Congress at which time a final decision relating to the venue of the next Congress would be made.
(8) Present andJuture activities o[ the Research Group The Chairman/Secretary reported that a report upon nutritional disorders of the neuromuscular apparatus, drafted initially by Prof. D . K . Dastur of Bombay and subsequently commented upon by Dr. Patrick Sourander of Sweden, Dr. K. K o n d o o f Japan and Prof. B.O. Osuntokun of Nigeria, was almost ready, with modification, for circulation to the members of the Executive Committee prior, it was hoped, to publication in the Journal o f the Neurological Sciences. The Chairman/Secretary also reported that Prof. W . G . Bradley of Boston, Dr. Peggy T h o m p s o n of Toronto and Prof. Alan Emery of Edinburgh had considered carefully the proposal made at the last meeting of the Executive Committee held in Montreal in 1978 to the effect that a further report should be prepared on behalf of the Research Group relating to criteria on carrier detection in Duchenne muscular dystrophy. However, these experts who were consulted had universally agreed that all of the relevant information on carrier detection had been published and that there would be little virtue in reproducing previous published work. Hence it was decided, after consideration of these reports, not to pursue this matter further. It was, however, noted that a further document on criteria to be laid down relating to clinical trials of treatment in Duchenne muscular dystrophy and in other related neuromuscular diseases was being drawn up by Prof. B.A. Kakulas of Perth, Western Australia, Dr. D. Gardner-Medwin of Newcastle upon Tyne, and Dr. Michael Brooke of St. Louis, MO, U.S.A., and was in the final stages of preparation. Once a final draft had been approved by all of the members o f the sub-committee, this draft would be submitted not only to members of the Executive Committee but also to all members o f the Research Group as a whole for their consideration finally, prior to publication in the Journal of the Neurological
Sciences. In relation to future activities of the Research Group, Prof. R, D. A d a m s suggested that it might be useful to set up a small sub-committee to consider in greater depth than before the embryology of skeletal muscle, and the Chairman/Secretary agreed to consider this. It was suggested that Prof. M. Fardeau of Paris and Dr. Fidzianska of Warsaw should be approached about the possibility of preparing such a report. It was also agreed that the Chairman/Secretary should approach Prof. Seitelberger of Vienna about the International Society of Neuropathologists' Congress which is to be held in Vienna shortly before the Marseille meeting, to express the hope that a session in Vienna be devoted to the pathology of skeletal muscle and peripheral nerve. The Chairman/Secretary reported that at present the Research Group has 142 members in 31 countries. It was agreed that in the minutes of the meeting, to be published in the Journal of the Neurological Sciences, it should again be pointed out that members of national societies affiliated to the W F N throughout the world who have a particular interest in any aspect of neuromuscular disease are eligible to apply for associate membership of the Research Group.
(9) Financial statement The Chairman/Secretary reported that while the Research Group no longer has any income from the Muscular Dystrophy G r o u p of Great Britain or from any other source, the financial situation of the Group remains relatively healthy in that the G r o u p retains a bank balance of approximately £2,745, which should be sufficient to cover the secretarial and other administrative expenses of the Group for several years to come. The Committee agreed that in the present situation there was therefore no need to seek alternative sources of finance, at least for the next few years.
(10) Research Committee q[' the WFN The Chairman/Secretary reported upon the activities of the Research Committee of the W F N and pointed out that while the Research Group on Neuromuscular Diseases remains one o f the most active, there has been a very marked improvement in the range of activities conducted by the W F N Research Groups and that a very satisfactory modus vivendi has been achieved between the Research Groups of the W F N on the one hand and international societies concerned with individual disciplines on the other.
(11) Any other business There being no other business, the meeting closed at 6.15 p.m. It was agreed that a meeting of the full Executive Committee of the Research Group, including the newly-appointed members, would be called at a mutually convenient date during the Vth International Congress on Neuromuscular Diseases in Marseille in September 1982. JOHN N. WALTON
Chairman/Secretary
457
World Federation of Neurology: Information
RESEARCH GROUP ON NEUROMUSCULAR DISEASES A meeting of the Executive Committee of the Research Group on Neuromuscular Diseases was held in Room 560 of the Kyoto International Conference Hall at 5.30 p.m. on Monday, 21 September 198 I.
(1) ApologiesJbr absence were received from Prof. F. Buchthal, Prof. D. K. Dastur, Prof. J.C. Dreyfus, Dr. W.K. Engel, Prof. R.W. Gilliatt, Prof. B.A. Kakulas, Prof. E. Kugelberg, Dr. E.H. Lambert, Dr. A.T. Milhorat and Prof. S.V. Perry. (2) Present were Prof. Sir John Walton (in the Chair), Prof. R.D. Adams, Prof. C. CoOrs, Prof. J.E. Desmedt, Prof. I. Hausmanowa-Petrusewicz and Prof. T. Tsubaki. Prof. E. Satoyoshi, Prof. M. Ben Hamida and Prof. E. Bharucha (associate members of the Research Group) were also present as observers. (3) Minutes The minutes of the previous meetings of the Research Group held in Montreal on 17 and 20 September 1978 were approved and there were no matters arising from the minutes. (4) E.A.M.D.A. The research report prepared for E.A.M.D.A. by the Chairman/Secretary was also approved, but it was suggested that in future E.A.M.D.A. be invited to send copies of its bi-annual pamphlet to all members of the Executive Committee of the Group. (5) Membership The Committee agreed unanimously to co-opt to its membership Prof. Georges Serratrice of Marseille, France, Prof. Eijiro Satoyoshi of Tokyo, Japan, and Prof. J. G. McLeod of Sydney, Australia. It was also agreed that in the minutes of the meeting of the Executive Committee, as ultimately published in the Journal of Neurological Sciences after approval by the members of the Committee, it should be mentioned formally that additional associate members of the Research Group, especially from developing countries, would be welcomed and an attempt would be made to obtain nominations from such developing countries. Any individual wishing to be considered for associate membership should write to Prof. Sir John Walton giving brief details of his/her qualifications and experience. (6) Vth International Congress on Neuromuscular Diseases The preliminary circular relating to the Vt'h International Congress on Neuromuscular Diseases, which is to be held in Marseille in September 1982, was considered by the Committee and no proposals were made for modification. The Committee noted with great regret that Prof. Carl Pearson of Los Angeles had died recently. A number of minor administrative points of detail relating to the organisation of the Vth International Congress were raised, especially by Prof. Hausmanowa-Petrusewicz, and the Chairman/Secretary, Prof. Sir John Walton, agreed to discuss these issues with Prof. Serratrice and to report individually to Prof. Hausmanowa-Petrusewicz about the outcome of these discussions during the World Congress in Kyoto. (7) Vlth International Congress on Neuromuscular Diseases The Chairman/Secretary reported that he had received a letter from Dr. W.K. Engel proposing that the Vlth International Congress on Neuromuscular Diseases, due to be held in 1986, should be held in the University of Southern California in Los Angeles, U.S.A. The Committee in general recommended this proposal, but pointed out that the final decision relating to the venue of the 1986 Congress could not be made until the next meeting of the Research Group was held during the forthcoming 1982 International Congress on Neuromuscular Diseases which will take place in Marseille in September 1982. In the meantime, the members of the Executive Committee wished to make it clear that other nominations of potential venues for the 1986 Congress would be considered, provided such nominations were received by the Chairman/Secretary not later than 30 June 1982. A further meeting 0022-510X/82/0000-0000/$02.75 © Elsevier Biomedical Press
458 of the Executive Committee of the Research Group would be held during the Marseille Congress at which time a final decision relating to the venue of the next Congress would be made.
(8) Present andJuture activities o[ the Research Group The Chairman/Secretary reported that a report upon nutritional disorders of the neuromuscular apparatus, drafted initially by Prof. D . K . Dastur of Bombay and subsequently commented upon by Dr. Patrick Sourander of Sweden, Dr. K. K o n d o o f Japan and Prof. B.O. Osuntokun of Nigeria, was almost ready, with modification, for circulation to the members of the Executive Committee prior, it was hoped, to publication in the Journal o f the Neurological Sciences. The Chairman/Secretary also reported that Prof. W . G . Bradley of Boston, Dr. Peggy T h o m p s o n of Toronto and Prof. Alan Emery of Edinburgh had considered carefully the proposal made at the last meeting of the Executive Committee held in Montreal in 1978 to the effect that a further report should be prepared on behalf of the Research Group relating to criteria on carrier detection in Duchenne muscular dystrophy. However, these experts who were consulted had universally agreed that all of the relevant information on carrier detection had been published and that there would be little virtue in reproducing previous published work. Hence it was decided, after consideration of these reports, not to pursue this matter further. It was, however, noted that a further document on criteria to be laid down relating to clinical trials of treatment in Duchenne muscular dystrophy and in other related neuromuscular diseases was being drawn up by Prof. B.A. Kakulas of Perth, Western Australia, Dr. D. Gardner-Medwin of Newcastle upon Tyne, and Dr. Michael Brooke of St. Louis, MO, U.S.A., and was in the final stages of preparation. Once a final draft had been approved by all of the members o f the sub-committee, this draft would be submitted not only to members of the Executive Committee but also to all members o f the Research Group as a whole for their consideration finally, prior to publication in the Journal of the Neurological
Sciences. In relation to future activities of the Research Group, Prof. R, D. A d a m s suggested that it might be useful to set up a small sub-committee to consider in greater depth than before the embryology of skeletal muscle, and the Chairman/Secretary agreed to consider this. It was suggested that Prof. M. Fardeau of Paris and Dr. Fidzianska of Warsaw should be approached about the possibility of preparing such a report. It was also agreed that the Chairman/Secretary should approach Prof. Seitelberger of Vienna about the International Society of Neuropathologists' Congress which is to be held in Vienna shortly before the Marseille meeting, to express the hope that a session in Vienna be devoted to the pathology of skeletal muscle and peripheral nerve. The Chairman/Secretary reported that at present the Research Group has 142 members in 31 countries. It was agreed that in the minutes of the meeting, to be published in the Journal of the Neurological Sciences, it should again be pointed out that members of national societies affiliated to the W F N throughout the world who have a particular interest in any aspect of neuromuscular disease are eligible to apply for associate membership of the Research Group.
(9) Financial statement The Chairman/Secretary reported that while the Research Group no longer has any income from the Muscular Dystrophy G r o u p of Great Britain or from any other source, the financial situation of the Group remains relatively healthy in that the G r o u p retains a bank balance of approximately £2,745, which should be sufficient to cover the secretarial and other administrative expenses of the Group for several years to come. The Committee agreed that in the present situation there was therefore no need to seek alternative sources of finance, at least for the next few years.
(10) Research Committee q[' the WFN The Chairman/Secretary reported upon the activities of the Research Committee of the W F N and pointed out that while the Research Group on Neuromuscular Diseases remains one o f the most active, there has been a very marked improvement in the range of activities conducted by the W F N Research Groups and that a very satisfactory modus vivendi has been achieved between the Research Groups of the W F N on the one hand and international societies concerned with individual disciplines on the other.
(11) Any other business There being no other business, the meeting closed at 6.15 p.m. It was agreed that a meeting of the full Executive Committee of the Research Group, including the newly-appointed members, would be called at a mutually convenient date during the Vth International Congress on Neuromuscular Diseases in Marseille in September 1982. JOHN N. WALTON
Chairman/Secretary