World Federation of Neurology: Information

JOURNAL Ol: THE NEUROLOGICALSCIENCES

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World Federation of Neurology: Information

ADMINISTRATIVE

MEETING OF THE F O U N D I N G MEMBERS OF THE PROBLEM COMMISSION OF NEUROGENET[CS (Albi, 26th May, 1965)

Under the chairmanship of Doctor Ludo van Bogaert. Those present comprised: P. E. Becker (G6ttingen), A. Barbeau (Montreal), A. Francesehetti (Geneva), Lisa Welander (Umea, Sweden), D. Klein (Secretary), T. Rabinovicz (Lausanne) (by invitation), and F. A m m a n n (Geneva) (by invitation). The following were unanimously appointed either as corresponding members (C) or as associate members (A). Germany: H. Bickel (C), Marburg/Lahn; K. H. Degenhardt (C), Frankfurt am Main; W. F. Haberlandt (C), T/Jbingen; G. Koch (C), Mtinster (Westf.); W. Lehmann (C), Kiel; W. Lenz (C), Mtinster (Westf.); G. G. Wendt (C), Marburg/Lahn; Edith Zerbin-Rfidin (C), Mfinchen 23. Belgium: P. Dodinval (A), Li+ge; and J. Hariga, Berchem-Anvers. Denmark: M. Hauge (A), Copenhagen; and J. Mohr (C), Copenhagen N. Finland: A. W. Eriksson (A), Helsinki. France." J. Fr6zal (C), Paris; L. Gayral (C), Toulouse; J. de Grouchy, Paris; R. Kherumian (C), Paris; J. Lejeune (C), Paris; J. M. Robert (C), Lyon; P. Delthil (A), Paris; J. Ruffi6 (C), Toulouse; J. Sutter (C), Paris; and R. Turpin (C), Paris. Norway." H. Skre (A), Bergen. The Netherlands: L. N. Went (C), Leiden; and L. S. Wildervanck (C), Groningen. Romania: G. Stroesco, Bucarest. Sweden: T. Larsson (C), Stockholm. Switzerland: F. Amman (C), Gen6ve; H. Kaeser (A), Basel; H. Moser (A), Bern; M. Mumenthaler (C), Bern; and U. Fl~inder (C), La Chaux-de-Fonds. The Third International Congress of Human Genetics (Chicago, September 5-10, 1966) Becker (G6ttingen) suggested contacting a travel agency in order to obtain reduced fares (by air or by ship). All the participants were invited to contact in due time Dr. Becker who will advise them of the results obtained. As regards the organization of a symposium of the Commission of Neurogenetics during the Congress - - such as it was done at the Congress of Genetics of the Hague, in September 1963, on The Methodology of Isolates - - the members considered it advisable to renounce to such a project. They believed that it would be wiser to hold this scientific meeting during the Congress of Neurogenetics and Neuro-Ophthalmology

which is scheduled to take place in Montreal in 1967, so that participants will have more time for submitting their suggestions. The Third International Congress of Neurogenetics and Neuro-Ophthalmology (Montreal 17th 23rd September, 1967) Dr. Barbeau from Montreal invited the members of the Commission of Neurogenetics to participate in this Congress. He had indeed already taken the necessary steps with the TownCouncil of Montreal to find available rooms. He will also try to obtain a reduction from Air Canada for the members of the Commissions of Neurogenetics and Neuro-Ophthalmology. Furthermore, the fact that the Congress will take place at the same time as the World Fair, should be a token of success for the Congress, all the more that transport facilities will be offered on this occasion. At the same moment, the Societies of Ophthalmology of Paris and Quebec will hold a combined session. Dr. Barbeau suggested the following topics for the symposium: (1) neuromuscular disorders, and their biochemical basis; and (2) the epidemiology of Huntington's chorea. Dr. Klein was also of the opinion that Montreal should be the site of this Symposium as numerous isolates with neuromuscular and neuro-ophthalmological genetic diseases are seen in the State of Quebec. Dr. van Bogaert was also in favour of Montreal, considering that in Chicago such a symposium would lose much of its importance in the bulk of other communications and reports. The members of the Commission of Neurogenetics later joined those of the Commission of Neuro-Ophthalmology and the meeting continued under the chairmanship of Dr. A. Franceschetti. Dr. Klein took the floor and summarized the conclusions the secretaries of various commissions arrived at during the meeting held in Berchem-Antwerp on the 12th December, 1964. He particularly stressed on the fact that some Commissions will be in a precarious financial situation consequent to the termination of the grant allocated by the National Institutes of Health (Bethesda, U.S.A.). Dr. Klein briefly reported on the suggestions which were made at that meeting with a view to solve the financial problem (application for funds to chemical and pharmaceutical manufacturers, to WHO, NATO and UNICEF). He also stated that a donation of SFr. 10,000 was made to the

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Secretary of the Commission of Neuromuscular Diseases, Dr. J. N. Walton (Newcastle, Great Britain) by the 'Poliomyelitis Research Fund', the 'Muscular Dystrophy Group' and the 'Multiple Sclerosis Society'. These funds will permit us to carry on the activities (more or less 200 to 300 dollars per annum). It appears that it will be necessary to ask in the future an individual annual membership fee of at least 2 dollars, in order to cover the secretarial expenses of each Commission and to give them a certain autonomy. On the other hand, Dr. van Bogaert pointed out that it would be a duty for the rich commissions to help certain commissions which do not possess financial facilities, such as the Commission of Tropical Neurology for instance. It was already decided in Antwerp in December, 1964 to set up an association grouping all the Problem Commissions, which will be known as Worm Association of Neurological Commissions (WANC). This Association will have its own statutes and administration. Dr. van Bogaert was of the opinion that Geneva would be chosen

as seat of this Association since the WHO and other international institutes have their site in that town. The founding of the W A N C has still to be approved by the WFN Executive Committee who will meet in Vienna the 4th September, 1965, during the International Congress of Neurology. Dr. van Bogaert also announced that a new Commission of Neuromuscular Disorders will be setup during this Congress and that its secretary will be Dr. Walton (Newcastle upon Tyne). Dr. A. Franceschetti suggested that the new Commission establish close contact with the Commission of Neurogenetics and NeuroOphthalmology with which it has numerous points of common interest. Reverting to the topics to be chosen for the Congress of Montreal in 1967, Dr. J. Franqois (Ghent) suggested Congenital Ocular Paralyses for the Commission of Neuro-Ophthalmology. Dr. Franceschetti would like to broaden this topic under the title of Congenital Opthatmoplegias which was unanimously accepted. D. KLEIN

ADMINISTRATIVE MEETING OF THE F O U N D I N G MEMBERS OF THE WFN PROBLEM COMMISSION ON N E U R O - O P H T H A L M O L O G Y (Albi, 26 May, 19657 Under the chairmanship of Prof. A Franceschetti, the following were present: G. B. Bietti (Rome), P. Br6geat (Paris), J. F. Cuendet (Lausanne), A. Franceschetti (Secretary), J, Franqois (Ghent), P. Guillot (Marseille), J. Imachi (Kobe), H. Moutinho (Lisbon), G. Offret (Paris), G. B. Streiff (Lausanne), P. Vancea (Bucarest) and J. Vanysek (Brno). The Secretary recalled the names of the corresponding (C) and associate (A) members who were nominated at the previous meeting held in Vienna, the 4th June, 1964, on the occasion of the Congress of the European Society of Ophthalmology. All of them have accepted their nomination: P. Amalric (A), Albi; Claire B6gaux (A), Anvers; J. B6ck (C), Wien; G. Decock (A), Anvers; J. lmachi (At, Kobe; F. Seitelberger (C), Wien; Klara Weingarten (A), Wien; and L. N. Went (A), Leiden. The Secretary stated that it had been decided that the Commission will continue its activity in spite of the financial difficulties, and that Prof. D. Klein, Secretary of the Problem Commission of Neurogenetics, is doing his utmost for the proceedings of the Symposium on The HeredoDegenerations of the Optic Nerve and their Relationship with Systemic Neurological Diseases to appear soon in the Journal de Gdndtique Humaine. The Secretary expressed its gratitude to Dr. P. Amalric, for his organization and his enthusiasm in the preparation of the International

Congress of Neuro-ophthalmology and Neurogenetics of Albi. The following were unanimously appointed, either as corresponding members (C), or associate members (A). Germany: H. K. Miiller (C), Bonn. Belgium: R. Weekers (C), Liege. Spain: A. Arruga, Jr. (At, Barcelone. Finland: H. Forsius (C), Oulu; France: P. Amalric (C), Albi; G. Farnarier (A), Marseille; and H; Saraux (A), Paris. The Netherlands: P. J. Waardenburg (C), Oosterbeek. Hungary: G. Lugossy (A), Budapest. Sweden: G. yon Bahr, Uppsala; and J. Rendahl (A), Stockholm. Switzerland: J. Babel (A), Geneve. Czechoslovakia: J. Vanysek, Brno. USSR: Roslavoev (A), Moscou. USA: Alan M~ Laties (A), Philadelphia; and William F. I-Ioyt (A), San Francisco. The question of replacement of members was discussed, and Dr. GuiUot suggested that certain associate members could be ~ippointed corresponding members later, after having shown a constant interest in neuro-ophthalmology. This suggestion was taken into consideration by the Secretary. However, it should be advisable that members should be first appointed associate members. It was then agreed that in the future a certain balance should be maintained between the

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WFN-NEWS problems of neuro-ophthalmology and those of neurogenetics. Therefore, it would be desirable that each Commission continues to be independent, while keeping close contacts, especially on the occasion of congresses or symposia. The Secretary said that he would be happy to

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receive suggestions for future symposia. He already retained Dr. Guillot's proposal - - interesting but somewhat premature - - to hold a symposium on the problems of 7-encephalography. A. FRANCESCHETTI

PROBLEM COMMISSION ON N E U R O M U S C U L A R DISEASES PLENARY MEETING OF F O U N D I N G MEMBERS (Vienna, 5th September 1965) (See also J. neurol. Sci. (1965) 2: 580-581) J. N. Walton was elected Secretary-General of the Commission and took the Chair. Present were: R. D. Adams, P. E. Becket, F. Buchthal, C. Co6rs, D. K. Dastur, R. Garcin, I. Hausmanowa Petrusewicz, E. Kugelberg, A. T. Milhorat and J. N. Walton; and, as observers from the World Association of Neurological Commissions, the President and Secretary, A. Franceschetti and D. Klein, and A. Barbeau, A. Lowenthal, F. Seitelberger and K. Weingarten. It was reported that the establishment of the problem commission, under the auspices of the World Federation of Neurology and within the World Association of Neurological Commissions has now been finally approved by the World Federation of Neurology. It was agreed that apart from the Secretary-General, J. N. Walton, there was no necessity to elect other officers.

Membership The election of the following 15 founding members of the Commission was confirmed: R. D. Adams (Boston), P. E. Becker (G6ttingen), F. Buchthal (Copenhagen), C. CoOrs (Brussels), D. K. Dastur (Bombay), J. C. Dreyfus (Paris), R. Garcin (Paris), N. Grashchenkov (Moscow), 1. Hausmanowa-Petrusewicz (Warsaw), E. Kugelberg (Stockholm), A. G. Everson Pearse (London), S. V. Perry (Birmingham), M. Sadka (Perth), T. Tsubaki (Niigata) and J. N. Walton (Newcastle upon Tyne). It was agreed by the Committee that there was no necessity at the present stage to add additional founding members to the Committee, though it was suggested that if on occasion problems dealing particularly with peripheral nerve pathology and physiology were to be considered, R. W. Gilliatt (London) and E. Lambert (Rochester) might be invited to join the meeting as co-opted members. The Secretary reported that 106 corresponding members from 30 countries had joined the Commission. The names of these corresponding members were considered individually and in detail by the Committee and the Secretary was instructed to write to an additional 47 individuals from 20 countries, asking them if they would be willing to become corresponding members.

Financial report The Secretary reported that the Poliomyelitis Research Fund of Great Britain and the Multiple Sclerosis Society of Great Britain had each made grants to the Commission of £ 1000 sterling per annum for three years, and the Muscular Dystrophy Group of Great Britain had made a similar grant of £ 500 per annum for three years. In accordance with the terms and conditions laid down by the Executive Committee of the World Association of Neurological Commissions one half of these sums was being remitted each year to the Central Secretariat of the World Association of Neurological Commissions in Geneva, and the remainder was being retained and separately administered from the office of the Commission in Newcastle upon Tyne. The one dollar subscription for founding and corresponding members was confirmed, though it was agreed that if any individual founding or corresponding member wished to contribute a larger sum from personal or departmental funds, this would be welcome. It was agreed that inability to pay the annual subscription would, however, be no bar to membership. ,4 inls

The aims of the Commission as laid down at the meeting of the Steering Committee held in Newcastle upon Tyne in January 1965 were confirmed and suggestions about future activities of the Commission made by various founding and corresponding members were considered in detail. (l) The Commission considered awarding limited research grants or fellowships for work in the field of neuromuscular diseases. The Committee considered that this suggestion was not practicable at the present time in view of the limited funds available. (2) To act as a link and coordinating body between national organizations at present supporting work in the field of neuromuscular diseases. It was agreed by the Committee that this was a worth-while aim and the Secretary was instructed to contact the Muscular Dystrophy Associations of America, the Muscular Dystrophy Association of Canada, the Muscular Dys-

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trophy Group of Great Britain, the Association Franqaise contre la Myopathie, the newlyformed Muscular Dystrophy Association in Germany, and similar groups which are being formed in Japan and Italy. In addition, it was suggested that a contact with the Polio Research Foundations of Denmark and Sweden would be useful. It was agreed that the Commission could serve a useful purpose in acting as a liaison between these various bodies concerned with research work in the neuromuscular diseases. It was also suggested that the Secretary should prepare a quarterly or biannual newsletter, which would be circulated to all founding and corresponding members, giving details of the progress of the Commission's work. Copies would be sent to the Secretariat of the World Association of Neurological Commissions and extracts might well appear in selected neurological journals. (3) To aid in the organization of co-operative international research projects, particularly in the field of the epidemiology of neuromuscular diseases. This suggestion was considered very carefully, but it was generally agreed that surveys of this nature would not, at the present time, serve a particularly useful purpose if carried out on an international basis, though there was certainly a considerable need for careful individual surveys of the incidence and genetic aspects of various neuromuscular diseases in different countries of the world, and the Commission would be glad to give such surveys their support. It was also felt that surveys of this nature fell more into the compass of the Commission on Geographical Neurology, but if that Commission were to propose surveys of the neuromuscular diseases, the Commission would be glad to collaborate. (4) To organize and finance small research symposia. It was agreed that such an activity might well serve a useful purpose. At the present stage, however, the Committee felt that so many symposia on the neuromuscular diseases are being organized by different bodies in many countries of the world that it would be preferable that the Commission give its support and help in the organization of these symposia, rather than organizing its own at the present stage. At the meeting the following forthcoming symposia were mentioned, and it was agreed that the Commission would be glad to give its support to each of these meetings. (i) A symposium on the biochemical genetics of neuromuscular disorders, to be held in Canada in 1967 (Barbeau gave preliminary information). (ii) An international meeting will probably be organized in New York in September 1966 under the auspices of the Muscular Dystrophy Associations of America.

(iii) An international meeting on electromyography is to be held in Glasgow in 1967. (iv) A symposium on the effects of use and disuse upon neuromuscular function is to be held in Prague in 1967. It was agreed that in each instance the Commission should give help, if requested to do so, in the organization of these meetings, and that the organisers be empowered to say that the meetings were being supported by the Problem Commission on Neuromuscular Diseases. Possibly modest financial assistance could also be given, if required. It was agreed that further details of these meetings should be published in regular newsletters as they became available. (5) To give financial support to research workers enabling them to attend research symposia. It was agreed that this could not be undertaken on a large scale, but several members of the Commission pointed out that there were many occasions when to give a small grant quickly was very valuable. It was agreed that the Secretary should, in the first instance, endeavour to advise corresponding members upon sources to whom they could apply for funds to cover travel of this nature. It was also agreed that the Secretary be authorised to expend a sum of up to £ 250 annually in individual grants, each not exceeding £ 50, and that these grants could be made available, on application, to members of the Commission. Ordinarily, these grants would be made at the discretion of the Secretary and of the organizing secretary of the meeting or symposium. or in consultation with one other member of the Committee. (6) To devise an internationally-agreed terminology and classification of the neuromuscular diseases. It was agreed that this was a most worth-while aim. The Secretary was asked to draw up a provisional draft classification of neuromuscular diseases and to circulate it to the other founding members of the Commission for their comments. It was hoped that such a classification would be complete and ready for publication prior to the Canadian symposium in 1967 (7) To consider the establishment of a journal devoted to the neuromuscular diseases. After considerable discussion, it was agreed that no such journal should be established at the present stage but that this suggestion might be reconsidered in the future. Seitelberger said that he would be very willing to publish material on the pathological aspects of the neuromuscular diseases in the Acta Neuropathologica and would look forward to receiving papers. It was also suggested that members of the Commission might he advised to send some of their published work to the Journal of the Neurological Sciences. A tribute was paid by several members to the importance and value of the Muscular Dystrophy Abstracts J. neurol. Sci. (1966) 3:613-617

WFN-NEWS published by the Excerpta Medica Foundation through the financial support received from the Muscular Dystrophy Associations of America. Many members commented that these abstracts were most valuable; suggestions were made about possible ways in which they might be improved, and it was agreed that suggestions of this nature should be sent to the Secretary for onward transmission to the Muscular Dystrophy Associations of America (MDAA). Milhorat agreed to ask the MDAA to consider adding the names of all founding and corresponding members of the Commission to the Association's mailing list for receipt of these abstracts. (8) To recommend a list of laboratories in different parts of the world which would be prepared to offer an advisory or diagnostic service to those faced with difficult problems in the neuromuscular field (e.g. in nerve and muscle histology, enzyme chemistry, etc.). After discussion, it was agreed that the Commission could carry out such a role in an advisory capacity. Several of the founding members agreed to act as scientific counsellors and it was suggested that any individual founding or corresponding member requiring advice of this nature should write to the Secretary, who would then put them in touch with the individual who seemed most likely to be able to help with their needs. A statement concerning the availability of such scientific counsellors might well appear in the neurological journals in the future. (9) To consider advising physicians and scientists upon the various centres in the world in which their young colleagues could obtain specific training in various fields of activity related to the neuromuscular diseases. It was agreed that the Commission should draw up a comprehensive list of laboratories. Buchthal suggested that the IBRO pro forma might serve as a useful basis for drawing up a proforma for use by the Commission. This proforma would be circulated to all founding members and to any corresponding member expressing interest who wished to have their name included in the list. It was agreed that once all the information received from various laboratories in different parts of the world was received and collated, the information would be disseminated to founding and corresponding members. (10) To consider the standardisation of biochemical methods and units utilized in the field of neuromuscular diseases (e.g. in enzyme chemistry). It was agreed that much work in this field had already been done and founding and corresponding members were advised to suggest that their laboratories should adopt the system of international units recently introduced on a world-wide basis. Buchthal raised the question

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as to whether some method could be found of standardizing qualitative or semi-quantitative methods of referring to muscle biopsy findings. The Committee considered that this would raise considerable difficulties, but agreed that an attempt should be made. Adams, Coers and Walton were appointed to a small sub-committee to consider this matter and to make recommendations. Adams suggested that the Commission should sponsor a central agency in which reference material of a pathological nature concerned with the neuromuscular diseases should be collected. After discussion, it was agreed that the formation of such a central reference library, containing information and very probably pathological slides and preparations on interesting problems in neuromuscular disease, would be worth-while. Adams agreed to investigate the possibility that such a central reference library might be established in the Warren Museum at Harvard University, within his department. The suggestion was made that individuals having interesting cases of this type under their care or possessing valuable pathological material related to the neuromuscular diseases, might then send details and a duplicate set of slides to this central reference library for filing. In due course, an international library might then be established in Boston which would be available to all workers in the field of neuromuscular diseases. It was agreed that priority for publication purposes, etc., should always rest with the individual who sent in the material to the central reference library and no publication embodying the findings in these cases would appear without his or her permission.

Miscellaneous The request from Gutmann for the support of the Commission in the organization of the symposium which he is organizing on The Effect t~( Use and Disuse on Neuromuscular Function in Prague in 1967 was agreed. [t was suggested that rules concerning the reimbursement of travelling and subsistence expenses to members attending meetings of the Commission should be referred to the Executive Committee of the World Association of Neurological Commissions, so that a general policy could be laid down covering the activities of all Commissions within the World Association. No decision was made concerning the data and time of the next meeting, and it was agreed that during the course of the next few months the Commission's business could be conducted largely by correspondence, but that the Secretary should be empowered to call another meeting of founding members if and when the need arose. J. N. WALTON J. neurol. Sci. (1966) 3:613-617