Building the French Muscular Dystrophy Association: The Role of Doctor/Patient Interactions

Social History of Medicine

Volumn 11, Issue 2, 1998, Pages 233-253

  Bach, Marie Anne ^a  

^a HÔPITAL NECKER ENFANTS MALADES   (France)

Author keywords

France; Muscular dystrophy; Neuromuscular diseases

Indexed keywords

ARTICLE; DOCTOR PATIENT RELATION; FRANCE; HEALTH CARE ORGANIZATION; HISTORY; HUMAN; MUSCULAR DYSTROPHY; NEUROMUSCULAR DISEASE;

FRANCE; HISTORY, 20TH CENTURY; HUMANS; MUSCULAR DYSTROPHIES; NEUROMUSCULAR DISEASES; PHYSICIAN-PATIENT RELATIONS; SOCIETIES;

EID: 0032133164     PISSN: 0951631X     EISSN: None     Source Type: Journal    
DOI: 10.1093/shm/11.2.233     Document Type: Article

References (155)

1. Rapport de gestion de l'AFM (1992) (Paris, 1993).
2. M.-A. Bach, 'La sclérose en plaques entre philanthropie et entraide: l'unité introuvable', Sciences Sociales et Santé, 13 (1995), 5-3.
3. C. Jones, 'Charity before c. 1850', in W. F. Bynum and R. Porter (eds.), Companion Encyclopedia of the History of Medicine, vol. 2 (London and New York, 1993), pp. 1469-79.
4. For more on the role of philanthropists, the medico-scientific community and/or government authorities in organizing and financing health care and medical research from the nineteenth century onwards, see W. F. Bynum, 'Medical Philanthropy After 1850', in Bynum and Porter (eds.), Companion Encyclopedia of the History of Medicine, vol. 2, pp. 1480-94; F. K. Prochaska, 'Philanthropy', in F. M. L. Thompson (ed.), The Cambridge Social History of Britain 1750-1950, vol. 3 (Cambridge, 1990), pp. 357-93; P. Weindling, 'The Modernization of Charity in Nineteenth-Century France and Germany', in J. Barry and C. Jones (eds.), Medicine and Charity Before the Welfare State (London and New York, 1991), pp. 190-206; H. Marland, 'Lay and Medical Conceptions of Medical Charity During the Nineteenth Century. The Case of the Huddersfield General Dispensary and Infirmary', in Barry and Jones (eds.), Medicine and Charity Before the Welfare State, pp. 149-71; J. Austoker, A History of the Imperial Cancer Research Fund 1902-1986 (Oxford, 1988); J. T. Patterson, The Dread Disease. Cancer and Modern American Culture (Cambridge and London, 1987).
5. For more on the role of philanthropists, the medico-scientific community and/or government authorities in organizing and financing health care and medical research from the nineteenth century onwards, see W. F. Bynum, 'Medical Philanthropy After 1850', in Bynum and Porter (eds.), Companion Encyclopedia of the History of Medicine, vol. 2, pp. 1480-94; F. K. Prochaska, 'Philanthropy', in F. M. L. Thompson (ed.), The Cambridge Social History of Britain 1750-1950, vol. 3 (Cambridge, 1990), pp. 357-93; P. Weindling, 'The Modernization of Charity in Nineteenth-Century France and Germany', in J. Barry and C. Jones (eds.), Medicine and Charity Before the Welfare State (London and New York, 1991), pp. 190-206; H. Marland, 'Lay and Medical Conceptions of Medical Charity During the Nineteenth Century. The Case of the Huddersfield General Dispensary and Infirmary', in Barry and Jones (eds.), Medicine and Charity Before the Welfare State, pp. 149-71; J. Austoker, A History of the Imperial Cancer Research Fund 1902-1986 (Oxford, 1988); J. T. Patterson, The Dread Disease. Cancer and Modern American Culture (Cambridge and London, 1987).
6. For more on the role of philanthropists, the medico-scientific community and/or government authorities in organizing and financing health care and medical research from the nineteenth century onwards, see W. F. Bynum, 'Medical Philanthropy After 1850', in Bynum and Porter (eds.), Companion Encyclopedia of the History of Medicine, vol. 2, pp. 1480-94; F. K. Prochaska, 'Philanthropy', in F. M. L. Thompson (ed.), The Cambridge Social History of Britain 1750-1950, vol. 3 (Cambridge, 1990), pp. 357-93; P. Weindling, 'The Modernization of Charity in Nineteenth-Century France and Germany', in J. Barry and C. Jones (eds.), Medicine and Charity Before the Welfare State (London and New York, 1991), pp. 190-206; H. Marland, 'Lay and Medical Conceptions of Medical Charity During the Nineteenth Century. The Case of the Huddersfield General Dispensary and Infirmary', in Barry and Jones (eds.), Medicine and Charity Before the Welfare State, pp. 149-71; J. Austoker, A History of the Imperial Cancer Research Fund 1902-1986 (Oxford, 1988); J. T. Patterson, The Dread Disease. Cancer and Modern American Culture (Cambridge and London, 1987).
7. For more on the role of philanthropists, the medico-scientific community and/or government authorities in organizing and financing health care and medical research from the nineteenth century onwards, see W. F. Bynum, 'Medical Philanthropy After 1850', in Bynum and Porter (eds.), Companion Encyclopedia of the History of Medicine, vol. 2, pp. 1480-94; F. K. Prochaska, 'Philanthropy', in F. M. L. Thompson (ed.), The Cambridge Social History of Britain 1750-1950, vol. 3 (Cambridge, 1990), pp. 357-93; P. Weindling, 'The Modernization of Charity in Nineteenth-Century France and Germany', in J. Barry and C. Jones (eds.), Medicine and Charity Before the Welfare State (London and New York, 1991), pp. 190-206; H. Marland, 'Lay and Medical Conceptions of Medical Charity During the Nineteenth Century. The Case of the Huddersfield General Dispensary and Infirmary', in Barry and Jones (eds.), Medicine and Charity Before the Welfare State, pp. 149-71; J. Austoker, A History of the Imperial Cancer Research Fund 1902-1986 (Oxford, 1988); J. T. Patterson, The Dread Disease. Cancer and Modern American Culture (Cambridge and London, 1987).
8. For more on the role of philanthropists, the medico-scientific community and/or government authorities in organizing and financing health care and medical research from the nineteenth century onwards, see W. F. Bynum, 'Medical Philanthropy After 1850', in Bynum and Porter (eds.), Companion Encyclopedia of the History of Medicine, vol. 2, pp. 1480-94; F. K. Prochaska, 'Philanthropy', in F. M. L. Thompson (ed.), The Cambridge Social History of Britain 1750-1950, vol. 3 (Cambridge, 1990), pp. 357-93; P. Weindling, 'The Modernization of Charity in Nineteenth-Century France and Germany', in J. Barry and C. Jones (eds.), Medicine and Charity Before the Welfare State (London and New York, 1991), pp. 190-206; H. Marland, 'Lay and Medical Conceptions of Medical Charity During the Nineteenth Century. The Case of the Huddersfield General Dispensary and Infirmary', in Barry and Jones (eds.), Medicine and Charity Before the Welfare State, pp. 149-71; J. Austoker, A History of the Imperial Cancer Research Fund 1902-1986 (Oxford, 1988); J. T. Patterson, The Dread Disease. Cancer and Modern American Culture (Cambridge and London, 1987).
9. For more on the role of philanthropists, the medico-scientific community and/or government authorities in organizing and financing health care and medical research from the nineteenth century onwards, see W. F. Bynum, 'Medical Philanthropy After 1850', in Bynum and Porter (eds.), Companion Encyclopedia of the History of Medicine, vol. 2, pp. 1480-94; F. K. Prochaska, 'Philanthropy', in F. M. L. Thompson (ed.), The Cambridge Social History of Britain 1750-1950, vol. 3 (Cambridge, 1990), pp. 357-93; P. Weindling, 'The Modernization of Charity in Nineteenth-Century France and Germany', in J. Barry and C. Jones (eds.), Medicine and Charity Before the Welfare State (London and New York, 1991), pp. 190-206; H. Marland, 'Lay and Medical Conceptions of Medical Charity During the Nineteenth Century. The Case of the Huddersfield General Dispensary and Infirmary', in Barry and Jones (eds.), Medicine and Charity Before the Welfare State, pp. 149-71; J. Austoker, A History of the Imperial Cancer Research Fund 1902-1986 (Oxford, 1988); J. T. Patterson, The Dread Disease. Cancer and Modern American Culture (Cambridge and London, 1987).
10. I. Löwy, 'On Hybridizations, Networks and New Disciplines: the Pasteur Institute and the Development of Microbiology in France', Studies of History and Philososophy of Sciences, 25 (1994), 655-88.
11. Jones, 'Charity before c. 1850'; H. Hatzfeld, Du paupérisme à la Sécurité sociale 1850-1940. Essai sur les origines de la Sécurité sociale (Nancy, 1989).
12. Jones, 'Charity before c. 1850'; H. Hatzfeld, Du paupérisme à la Sécurité sociale 1850-1940. Essai sur les origines de la Sécurité sociale (Nancy, 1989).
13. M. Agulhon, 'L'histoire sociale et les associations', La revue de l'économie sociale, 14 (1988), 35-44.
14. A. Mitchell, 'The Function and Malfunction of Mutual Aid Societies in Nineteenth-Century France', in Barry and Jones (eds.), Medicine and Charity Before the Welfare State, pp. 172-89.
15. J. E. Curtis, E. G. Grabb, and D. E. Baer, 'Voluntary Association Membership in Fifteen Countries : a Comparative Analysis', American Sociological Review, 57 (1992), 139-52.
16. Hatzfeld, Du paupérisme à la Sécurité sociale 1850-1940.
17. J.-F. Picard, La République des savants. La Recherche française et le C.N.R.S. (Paris, 1990); P. Pinell, Naissance d'un fléau. Histoire de la lutte contre le cancer en France (1890-1940) (Paris, 1992); J.-F. Picard, 'Poussée scientifique ou demande des médecins? La recherche médicale en France de l'Institut national d'hygiène à l'INSERM', Sciences Sociales et Santé, X (1992), 47-106.
18. J.-F. Picard, La République des savants. La Recherche française et le C.N.R.S. (Paris, 1990); P. Pinell, Naissance d'un fléau. Histoire de la lutte contre le cancer en France (1890-1940) (Paris, 1992); J.-F. Picard, 'Poussée scientifique ou demande des médecins? La recherche médicale en France de l'Institut national d'hygiène à l'INSERM', Sciences Sociales et Santé, X (1992), 47-106.
19. J.-F. Picard, La République des savants. La Recherche française et le C.N.R.S. (Paris, 1990); P. Pinell, Naissance d'un fléau. Histoire de la lutte contre le cancer en France (1890-1940) (Paris, 1992); J.-F. Picard, 'Poussée scientifique ou demande des médecins? La recherche médicale en France de l'Institut national d'hygiène à l'INSERM', Sciences Sociales et Santé, X (1992), 47-106.
20. Picard, La République des savants.
21. D. Lamiot and P.-J. Lancry, La Protection sociale. Les enjeux de la solidarité (Paris, 1989).
22. H. Jamous, Rationalisation, mobilisation sociale et pouvoir. Idées et travaux de recherche sur la santé, l'aménagement urbain et les transports (Paris, 1973).
23. J.-F. Picard, 'Poussée scientifique ou demande des médecins?'
24. In the INSERM research laboratories, only 50.5 per cent of operating expenses (exclusive of personnel) are covered by the responsible government organization (information provided by the INSERM Administration, Department of Finance and Research Assessment for 1992).
25. S. Brossat and P. Pinell, 'Coping with Parents', Sociology of Health and Illness, 12 (1990), 69-83; C. Herzlich and J. Pierret, Malades d'hier, malades d'aujourd'hui. De la mort collective au devoir de guérison (Paris, 1984). Some of the oldest and most important, apart from the AFM, include the APF (French Paralytics Association) and the National Union of Friends and Parents of Maladjusted Children, which focus on the medical and social re-adaptation of handicapped children.
26. S. Brossat and P. Pinell, 'Coping with Parents', Sociology of Health and Illness, 12 (1990), 69-83; C. Herzlich and J. Pierret, Malades d'hier, malades d'aujourd'hui. De la mort collective au devoir de guérison (Paris, 1984). Some of the oldest and most important, apart from the AFM, include the APF (French Paralytics Association) and the National Union of Friends and Parents of Maladjusted Children, which focus on the medical and social re-adaptation of handicapped children.
27. Pinell, Naissance d'un fléau; Patterson, The Dread Disease; Marland, 'Lay and Medical Conceptions of Medical Charity'.
28. Pinell, Naissance d'un fléau; Patterson, The Dread Disease; Marland, 'Lay and Medical Conceptions of Medical Charity'.
29. Pinell, Naissance d'un fléau; Patterson, The Dread Disease; Marland, 'Lay and Medical Conceptions of Medical Charity'.
30. Bach, 'La sclérose en plaques entre philanthropie et entraide'.
31. F. Paterson and C. Barral, 'L'Association Française contre les myopathies: trajectoire d'une association d'usagers et construction associative d'une maladie', Sciences Sociales et Santé, XII (1994), 79-111.
32. B. Barataud, Au nom de nos enfants (Paris, 1992); Y. de Kepper, Les enfants myopathes. Un pari sur l'espérance (Paris, 1988); P. Defert, Mémoires d'un voyageur. On peut être myopathe et expert en tourisme (Paris, 1981).
33. B. Barataud, Au nom de nos enfants (Paris, 1992); Y. de Kepper, Les enfants myopathes. Un pari sur l'espérance (Paris, 1988); P. Defert, Mémoires d'un voyageur. On peut être myopathe et expert en tourisme (Paris, 1981).
34. B. Barataud, Au nom de nos enfants (Paris, 1992); Y. de Kepper, Les enfants myopathes. Un pari sur l'espérance (Paris, 1988); P. Defert, Mémoires d'un voyageur. On peut être myopathe et expert en tourisme (Paris, 1981).
35. Professor Michel Arthuis, former head of a neuropaediatrics department in Hospital St-Vincent de Paul, interview with the author (14 February 1996); Professors Maurice Goulon and Annie Barois, former heads of intensive care departments in Hospital R. Poincaré, interviews with the author (31 May 1996 and 15 July 1996 respectively); A. Grossiord, Leçon inaugurale. Chaire de Clinique de Rééducation Motrice (Paris, 1968).
36. A. Brissaud, 'Vers un groupe interparlementaire de la myopathie', Le courrier de la myopathie, 15 (1964), 2.
37. INSERM Archives 771535/82, 771535/42, and 9203.
38. For most clinicians as well as biochemists, all forms of MD came under a unique pathophysiological process until the mid-1950s, when research by a few geneticists and specialists of electron microscopy shattered this conception. A synthesis of all this research (J. N. Walton and F. J. Nattrass, 'On the Classification, Natural History and Treatment of Myopathies', Brain, 77 (1954), 16-231) was the starting point of a nosological breakup of myopathy based on confronting clinical and genetic data.
39. A. T. Milhorat and J. C. Hinsey, 'Proceedings of the Third Medical Conference Sponsored by the Muscular Dystrophy Association of America, Inc. Opening Addresses', American Journal of Physical Medicine, 34 (1955), 3-7.
40. G. Schapira, J.-C. Dreyfus, and F. Schapira, 'L'élévation du taux d'aldolase sérique: test biochimique des myopathies', Semaine des hôpitaux de Paris, 29 (1953), 1917-20.
41. J.-P. Gaudillière, 'Biochimistes et biomédecine dans l'après-guerre: deux itinéraires entre laboratoire et hôpital', Sciences Sociales et Santé, X (1992), 107-47.
42. Biographical information on Démos, who died in March 1995, is drawn from interviews with his wife Gilberte Démos, with former colleagues of his at the Schapira laboratory (Pr Jean Rosa, 12 June 1995 and Dr Raymond Sadi, 6 October 1995) and with the founder of AFM (Yolaine de Kepper, 11 October 1995), as well as from a biographical note written in 1972 by André Brissaud, AFM's and later COFRASORM's vice-president (see below). This information was provided by his wife (Jeanne Brissaud, interview with the author, 23 October 1995).
43. J. Démos and J. Écoiffier, 'Troubles circulatoires au cours de la myopathie; études artériographiques', Revue Françise d'Études Cliniques et Biologiques, 2 (1957), 489-4.
44. J. Démos, 'Tentative Evaluation of a Possible Therapeutic Action during Myopathy. Critical Study of the Action of P-Hydroxy Phenyl-Butyl-Aminoéthanol', Semaine des Hôpitaux de Paris, 39 (1963), 572-9.
45. A member of the French Catholic upper class, Mrs de Kepper had then five children, two of whom were suffering from MD (two other children were born later with MD); she contacted the Schapira laboratory in 1956 (de Kepper, Les enfants myopathes, INSERM Archives, 9102).
46. Debré had already created the Société d'Études et de Soins aux Enfants Poliomyélitiques (SESEP), an organization co-financing Schapira's laboratory (Gaudillière, 'Biochimistes et biomédecine dans l'après-guerre', p. 128). The particulars of setting up the organization were finalized with Debré and Schapira in 1957 (INSERM Archives 9102; de Kepper, interview with the author).
47. J. Démos, 'Myopathies: traitement et réadaptation', Réadaptation, 118 (1965), 7-9.
48. La Médecine infantile, 70 (1963) 381-428; Le courrier de la myopathie, 18 (1965).
49. La Médecine infantile, 70 (1963) 381-428; Le courrier de la myopathie, 18 (1965).
50. Une équipe de parents, 'Le myopathe en famille. Traitement et vie quotidienne', Réadaptation, 179 (1971), 27-38.
51. J.-P. Goubert, La conquête de l'eau. L'avènement de la santé à l'âge industriel (Paris, 1986).
52. A. Laqueche, 'Croix-Rouge française et myopathie. Comment fonctionne le Nid Marin à Hendaye', Le courrier de la myopathie, 16 (1965), p. 4; J.-P. Carbonnier and P. Dague, 'Le Centre du Petit-Tremblay reçoit 51 enfants myopathes', Réadaptation, 179 (1971), 41-4; J. Démos, 'Hendaye: le premier pas coûte le plus', Le courrier de la myopathie, 16 (1965) 4.
53. A. Laqueche, 'Croix-Rouge française et myopathie. Comment fonctionne le Nid Marin à Hendaye', Le courrier de la myopathie, 16 (1965), p. 4; J.-P. Carbonnier and P. Dague, 'Le Centre du Petit-Tremblay reçoit 51 enfants myopathes', Réadaptation, 179 (1971), 41-4; J. Démos, 'Hendaye: le premier pas coûte le plus', Le courrier de la myopathie, 16 (1965) 4.
54. A. Laqueche, 'Croix-Rouge française et myopathie. Comment fonctionne le Nid Marin à Hendaye', Le courrier de la myopathie, 16 (1965), p. 4; J.-P. Carbonnier and P. Dague, 'Le Centre du Petit-Tremblay reçoit 51 enfants myopathes', Réadaptation, 179 (1971), 41-4; J. Démos, 'Hendaye: le premier pas coûte le plus', Le courrier de la myopathie, 16 (1965) 4.
55. J. C. Dreyfus, G. Schapira, and J. Demos, 'Étude de la creatine-kinase sérique chez les myopathes et leurs familles', Revue Française d'Etudes Cliniques et Biologiques, 5 (1960), 384-6.
56. F. Lepage and B. Michelon, 'Incidences obstétricales des myopathies', La Médecine infantile, 70 (1963), 413-16.
57. The principle of reimbursing 100 per cent of medical expenses was accepted in 1969, but its local implementation was fought against by social security branches for some time afterwards.
58. 'It may be said today that medical, social and educational non intervention concerning patients with MD is no longer justifiable.' (Le courrier de la myopathie, 16 (1965), 3.)
59. He received a 'Children Health' medal from the French Academy of Medicine in 1963 (Le courrier de la myopathie, 12 (1964), 1), and the 'Salon de l'Enfance' award for his entire work in 1965 ( Le courrier de la myopathie, 16 (1965), 1).
60. He received a 'Children Health' medal from the French Academy of Medicine in 1963 (Le courrier de la myopathie, 12 (1964), 1), and the 'Salon de l'Enfance' award for his entire work in 1965 ( Le courrier de la myopathie, 16 (1965), 1).
61. D. Laplane, 'Données récentes sur les myopathies,' Presse medicale, 70 (1962), 1929-31.
62. 'La myopathie aura sa place dans le 5ème plan d'équipement sanitaire', Le courrier de la myopathie, 17 (1965), 3, 6.
63. A. E. H. Emery and M. L. H. Emery, The History of a Genetic Disease. Duchenne Muscular Dystrophy or Meryon's Disease (London, 1995), pp. 157-68; Professor Michel Fardeau, interviews with the author (27 March 1996 and 16 April 1996).
64. J. Démos, 'Présence d'une amino diphénoloxydase dans les plaquettes sanguines humaines. Existence d'un variant de cette enzyme chez les malades atteints de myopathie (forme de Duchenne de Boulogne)', Compte-rendus de l'Académie des sciences (Paris), 267 (1968), 677-80.
65. Fanny Schapira and Georges Schapira, interview with the author (26 June 1995).
66. Schapira managed to thwart Démos' project of creating a research unit, promised by the Minister, by mobilizing the Scientific Commission in charge of assessing it (INSERM Archives, 760215/14, 760215/15, 9440).
67. INSERM Archives, 9440, 760215/17.
68. René Dumont, former president of the UMF (1971-1978) and Thérèse Dumont, interview with the author (15 September 1995); Claudette Edrei, former UMF's president (1978-1981), interview with the author (24 January 1996); Le courrier de la myopathie, 14 (1964), 4.
69. de Kepper, interview with the author; Le courrier de la myopathie, numéro spécial (1963), 4.
70. de Kepper, Les enfants myopathes, pp. 81-4; G. Démos, interview with the author; J. Démos, 'Faisons le point', Le courrier de la myopathie, 26 (1967), 3; Y. de Kepper, 'Signes de vitalité', Le courrier de la myopathie, 26 (1967) p.3.
71. de Kepper, Les enfants myopathes, pp. 81-4; G. Démos, interview with the author; J. Démos, 'Faisons le point', Le courrier de la myopathie, 26 (1967), 3; Y. de Kepper, 'Signes de vitalité', Le courrier de la myopathie, 26 (1967) p.3.
72. de Kepper, Les enfants myopathes, pp. 81-4; G. Démos, interview with the author; J. Démos, 'Faisons le point', Le courrier de la myopathie, 26 (1967), 3; Y. de Kepper, 'Signes de vitalité', Le courrier de la myopathie, 26 (1967) p.3.
73. Le courrier de la myopathie, 26 (1967), 3.
74. Le courrier de la myopathie, 29 (1968), 1.
75. Vaincre la myopathie, 12 supplément (1969), 1-2.
76. de Kepper, interview with the author. Another significant investment was tor electric wheelchairs, funded by AFM starting in 1972 (Le courrier de la myopathie, 46 (1972), 14).
77. This support decreased from FRF87,000 in 1968 to an average FRF52,000 a year over the 1969-78 period according to the annual financial report published in Le courrier de la myopathie.
78. Professor Jean Schmitt, interview with the author, 17 October 1995; Le courrier de la myopathie, 48 (1973) 3-4.
79. Y. Rideau, 'Pronostic des myopathies liées au sexe. Incidence sur la thérapeutique et la réadaptation', Cahiers de rééducation et de réadaptation fonctionnelles, 12 (1977), 39-52.
80. Y. Rideau, Myopathie, dystrophie musculaire (Angers, 1977).
81. Fardeau's electron microscopy laboratory, which was part of the neuropathology laboratory headed by Professors Raymond Garcin and Jean Lapresle and later Doctor Jean Grüner, enjoyed concerted action from DGRST (1962-63) and later joint support from CNRS and INSERM (in 1971), and permanently became independent as an INSERM Unit in 1976: (Fardeau, interview with the author; M. Fardeau, 'Notice de titres et travaux scientifiques' (unpublished résumé, 1986); INSERM Archives (SAN 72381, 9440, 9203, 9419).
82. M. Fardeau, J. Godet-Guillain, F.M.S. Tomé, S. Carson, and R. G. Whalen, 'Congenital Neuromuscular Disorders: a Critical Review', in A. J. Aguayo and G. Karpati (eds.), Current Topics in Nerve and Muscle Research (Amsterdam, Oxford, 1979), pp. 164-77; Professor F. Gros, head of a molecular genetics laboratory at the Institut Pasteur and President of the AFM's Scientific Council since 1986, interview with the author (5 October 1995); Fardeau, interview with the author.
83. INSERM Archives, 9440; Fardeau, interview with the author.
84. Neuromuscular diseases include primitive muscular diseases as well as myasthenic syndromes and neurogenic muscular atrophies.
85. G. Démos, interview with the author; Rosa, interview with the author.
86. Georges Serratrice, Professor of neurology, interview with the author (25 September 995); Fardeau, interviews with the author.
87. 'Discussion - Pathogenesis of Muscular Dystrophy', in B. A. Kakulas (ed.), Clinical Research in Myology. Proceedings of the Second International Congress on Muscle Diseases (Amsterdam, 1973), pp. 695-711.
88. J. R. Mendell, W. King Engel, and E. C. Derrer, 'Duchenne Muscular Dystrophy: Functional Ischemia Reproduces Its Characteristic Lesions, Science, 172 (1971), 1143-5; W. King Engel and E. C. Derrer, 'Drugs Blocking the Muscle-Damaging Effects of 5-HT and Noradrenaline in Aorta- Ligatured Rats', Nature, 254 (1975), 151-2.
89. J. R. Mendell, W. King Engel, and E. C. Derrer, 'Duchenne Muscular Dystrophy: Functional Ischemia Reproduces Its Characteristic Lesions, Science, 172 (1971), 1143-5; W. King Engel and E. C. Derrer, 'Drugs Blocking the Muscle-Damaging Effects of 5-HT and Noradrenaline in Aorta-Ligatured Rats', Nature, 254 (1975), 151-2.
90. G. Schapira, F. Schapira, Rosa, Fardeau, interviews with the author; I. Pacold, J. Morgan, and L. Cohen, 'Absence of Differences in Platelet Dihydroxyphenylalanine (DOPA) Oxidase Polymorphism in Health and Duchenne Muscular Dystrophy', Clinical Genetics, 7 (1975), 435-44.
91. INSERM Archives (9203, 9440, 9525).
92. G. Démos, interview with the author. His main supporters were Professor Philippe Laudat, Science Director 1975-1979 and later Director General at INSERM 1979-1982, and Professor Pierre Rover, Chairman of INSERM's Science Council (1968-1974) (INSERM Archives, 9440).
93. This fight was supported in 1973 by Bernard Barataud, a new member from the Jura region and the current president of AFM (INSERM Archives 9203, Vaincre la myopathie, 50 (1973), 1).
94. INSERM archives 9203, 9440, 9525.
95. Vaincre la myopathie, 18 (1970), 1; Vaincre la myopathie, 37 (1972), 1.
96. Vaincre la myopathie, 18 (1970), 1; Vaincre la myopathie, 37 (1972), 1.
97. 'Les Journées sur la Thérapeutique de la Myopathie', Cahiers de rééducation et de réadaptation fonctionnelle, 8 (1973) 113-45 and 221-47.
98. The rest of the medico-scientific community remained sceptical about the predictive value of this assay and Démos himself had to admit some failures (some mothers whom he considered to be non-carriers on the basis of his test eventually gave birth to boys with MD) (J. Démos, 'A propos de 27 années d'expérience concernant la myopathie', Réadaptation, 278 (1981) 12-14).
99. Starting on 17 December 1967, French birth control legislation made contraception legal. The Veil Act voted on 19 December 1974 facilitated access to abortion, set the limits on abortion for medical reasons, and allowed prenatal diagnosis to be made widespread.
100. A. E. H. Emery, M.-M. Nelson, and O. Mayo, 'Antenatal Diagnosis and the Muscular Dystrophies', in G. Serratrice and H. Roux (eds.), Actualités de pathologie neuromusculaire-Advances in Neuromuscular Diseases (Paris, 1971), pp. 13-18; G. Schapira, 'Perspectives dans le domaine de la myopathie', Réadaptation, 179 (Numéro spécial) (1971), 12-15; J. Démos, 'Les moyens actuels de lutte contre la myopathie en France et les perspectives d'avenir', Vaincre la myopathie, 49 (1973), 1.
101. A. E. H. Emery, M.-M. Nelson, and O. Mayo, 'Antenatal Diagnosis and the Muscular Dystrophies', in G. Serratrice and H. Roux (eds.), Actualités de pathologie neuromusculaire-Advances in Neuromuscular Diseases (Paris, 1971), pp. 13-18; G. Schapira, 'Perspectives dans le domaine de la myopathie', Réadaptation, 179 (Numéro spécial) (1971), 12-15; J. Démos, 'Les moyens actuels de lutte contre la myopathie en France et les perspectives d'avenir', Vaincre la myopathie, 49 (1973), 1.
102. A. E. H. Emery, M.-M. Nelson, and O. Mayo, 'Antenatal Diagnosis and the Muscular Dystrophies', in G. Serratrice and H. Roux (eds.), Actualités de pathologie neuromusculaire-Advances in Neuromuscular Diseases (Paris, 1971), pp. 13-18; G. Schapira, 'Perspectives dans le domaine de la myopathie', Réadaptation, 179 (Numéro spécial) (1971), 12-15; J. Démos, 'Les moyens actuels de lutte contre la myopathie en France et les perspectives d'avenir', Vaincre la myopathie, 49 (1973), 1.
103. R. Dumont and T. Dumont, interview with the author.
104. 'Avortement et myopathie', Vaincre la myopathie, 22 (1971), 2; 'Myopathie et contraception', Vaincre la myopathie, 40 (1972), 2; 'Avoir ou ne pas avoir d'enfants', Vaincre la myopathie, 43 (1973), 2.
105. 'Avortement et myopathie', Vaincre la myopathie, 22 (1971), 2; 'Myopathie et contraception', Vaincre la myopathie, 40 (1972), 2; 'Avoir ou ne pas avoir d'enfants', Vaincre la myopathie, 43 (1973), 2.
106. 'Avortement et myopathie', Vaincre la myopathie, 22 (1971), 2; 'Myopathie et contraception', Vaincre la myopathie, 40 (1972), 2; 'Avoir ou ne pas avoir d'enfants', Vaincre la myopathie, 43 (1973), 2.
107. 'Le projet de loi sur l'avortement: le Pr Lejeune répond à nos questions', Le courrier de la myopathie, 40 (1971), 6-9; T. Aubert, 'Est-il raisonnable de laisser naître un enfant handicapé?', Le courrier de la myopathie, 42 (1971), 20.
108. 'Le projet de loi sur l'avortement: le Pr Lejeune répond à nos questions', Le courrier de la myopathie, 40 (1971), 6-9; T. Aubert, 'Est-il raisonnable de laisser naître un enfant handicapé?', Le courrier de la myopathie, 42 (1971), 20.
109. Micheline Fourquet, interview with the author (11 September 1995); J. Brissaud, interview with the author.
110. Minutes of the meetings of the general assemblies of the COFRASORM (29 June 1974, 29 June 1977 and 28 June 1980).
111. This term was first used by Pierre Birambeau (Vaincre la myopathie, 95 (1979), 1; Vaincre la myopathie, 101 (1979), 1), a UMF member since 1978, to refer to a group of new members who were parents of young children with Duchenne's myopathy; it actually included parents who had joined slightly earlier, such as B. Barataud, both groups uniting to adopt and enforce joint positions in terms of the Association's policy.
112. This term was first used by Pierre Birambeau (Vaincre la myopathie, 95 (1979), 1; Vaincre la myopathie, 101 (1979), 1), a UMF member since 1978, to refer to a group of new members who were parents of young children with Duchenne's myopathy; it actually included parents who had joined slightly earlier, such as B. Barataud, both groups uniting to adopt and enforce joint positions in terms of the Association's policy.
113. P. Birambeau 'Vaincre le silence', Vaincre la myopathie, 102 (1980), 3.
114. Barataud, Au nom de nos enfants, p. 101; R. Dumont, letter to UMF members (10 April 1978) and interview with the author.
115. Barataud, Au nom de nos enfants, pp. 149-50.
116. C. Edrei and P. Birambeau, 'Parlons recherche', Vaincre la myopathie, 101 (1979), 1.
117. C. Edrei, 'Perspectives', Vaincre la myopathie, 103 (1980), 1; P. Birambeau, 'La recherche sur la myopathie en France', Vaincre la myopathie, 106 (1980), 5.
118. C. Edrei, 'Perspectives', Vaincre la myopathie, 103 (1980), 1; P. Birambeau, 'La recherche sur la myopathie en France', Vaincre la myopathie, 106 (1980), 5.
119. B. Barataud, 'Évolution vers l'union', Vaincre la myopathie, 120 (1981), 2.
120. Bach, 'La sclérose en plaques entre philanthropie et entraide'.
121. Vaincre la myopathie, 124 (1982), 1.
122. Y. de Kepper, 'Nous voilà sur une nouvelle lancée', Le courrier de la myopathie, 89 (1981), 1.
123. In 1987, AMF changed its name to AFM, Association Française contre les Myopathies (plural) (Vaincre les myopathies, 24 (1987), 3).
124. Minutes of the meetings of the general assembly of the COFRASORM (28 June 1980). COFRASORM dissolved in 1995. Démos, who was ill and close to retirement (his research unit was closed in 1984) was gradually driven out from research and lost all influence in the Association (G. Démos, Fourquet, and Edrei, interviews with the author).
125. B. Barataud, 'Gagner du temps sur le temps', Vaincre les myopathies, 16 (1986), 2.
126. Vaincre les myopathies, 1 (1982), 2.
127. B. Barataud, 'Espoir', Vaincre les myopathies, 2 (1983), 1.
128. Barataud, Au nom de nos enfants, p. 163.
129. R. Cadoret, 'Politique de l'Association face à la recherche médicale', Vaincre les myopathies, 10 (1984), 4-5.
130. Fardeau, Gros, and Edrei, interviews with the author; Barataud, Au nom de nos enfants, pp. 156-9.
131. R. Cadoret, 'Politique de l'Association face à la recherche médicale', Vaincre les myopathies, 12 (1985), 6-7.
132. Edrei and Gros, interviews with the author.
133. 'Appel d'offres', Vaincre la myopathie, 124 (1982), 1; 'Appel d'offres 1982-1983', Vaincre les myopathies, 1 (1982), 2; 'Programmes scientifiques', Vaincre les myopathies, 5 (1983), 8-9; 'Le financement de la recherche en 1984', Vaincre les myopathies, 14 (1985), 3-4; 'Thèmes des programmes accordés par le Conseil Scientifique', Vaincre les myopathies, 16 (1986), 10-11.
134. 'Appel d'offres', Vaincre la myopathie, 124 (1982), 1; 'Appel d'offres 1982-1983', Vaincre les myopathies, 1 (1982), 2; 'Programmes scientifiques', Vaincre les myopathies, 5 (1983), 8-9; 'Le financement de la recherche en 1984', Vaincre les myopathies, 14 (1985), 3-4; 'Thèmes des programmes accordés par le Conseil Scientifique', Vaincre les myopathies, 16 (1986), 10-11.
135. 'Appel d'offres', Vaincre la myopathie, 124 (1982), 1; 'Appel d'offres 1982-1983', Vaincre les myopathies, 1 (1982), 2; 'Programmes scientifiques', Vaincre les myopathies, 5 (1983), 8-9; 'Le financement de la recherche en 1984', Vaincre les myopathies, 14 (1985), 3-4; 'Thèmes des programmes accordés par le Conseil Scientifique', Vaincre les myopathies, 16 (1986), 10-11.
136. 'Appel d'offres', Vaincre la myopathie, 124 (1982), 1; 'Appel d'offres 1982-1983', Vaincre les myopathies, 1 (1982), 2; 'Programmes scientifiques', Vaincre les myopathies, 5 (1983), 8-9; 'Le financement de la recherche en 1984', Vaincre les myopathies, 14 (1985), 3-4; 'Thèmes des programmes accordés par le Conseil Scientifique', Vaincre les myopathies, 16 (1986), 10-11.
137. 'Appel d'offres', Vaincre la myopathie, 124 (1982), 1; 'Appel d'offres 1982-1983', Vaincre les myopathies, 1 (1982), 2; 'Programmes scientifiques', Vaincre les myopathies, 5 (1983), 8-9; 'Le financement de la recherche en 1984', Vaincre les myopathies, 14 (1985), 3-4; 'Thèmes des programmes accordés par le Conseil Scientifique', Vaincre les myopathies, 16 (1986), 10-11.
138. In December 1981 MDAA sponsored a symposium on this topic and made it a priority (H. F. Epstein and S. Wolf (eds.), Genetic Analysis of the X Chromosome; Studies of Duchenne Muscular Dystrophy and Related Disorders (New York and London, 1982)).
139. Projects from Professors Jean-Claude Kaplan and Jean-Louis Mandel received AFM grants starting in 1983 and 1985 respectively ('Programmes scientifiques', Vaincre les myopathies, 5 (1983), 8-9; 'Le financement de la recherche en 1984', Vaincre les myopathies, 14 (1985), 3-4; 'Thèmes des programmes accordés par le Conseil Scientifique', Vaincre les myopathies, 16 (1986), 10-11).
140. Projects from Professors Jean-Claude Kaplan and Jean-Louis Mandel received AFM grants starting in 1983 and 1985 respectively ('Programmes scientifiques', Vaincre les myopathies, 5 (1983), 8-9; 'Le financement de la recherche en 1984', Vaincre les myopathies, 14 (1985), 3-4; 'Thèmes des programmes accordés par le Conseil Scientifique', Vaincre les myopathies, 16 (1986), 10-11).
141. Projects from Professors Jean-Claude Kaplan and Jean-Louis Mandel received AFM grants starting in 1983 and 1985 respectively ('Programmes scientifiques', Vaincre les myopathies, 5 (1983), 8-9; 'Le financement de la recherche en 1984', Vaincre les myopathies, 14 (1985), 3-4; 'Thèmes des programmes accordés par le Conseil Scientifique', Vaincre les myopathies, 16 (1986), 10-11).
142. Y. Rideau and B. Glorion, 'Total prevention of Scoliosis in Duchenne's Muscular Dystrophy', V International Congress on Neuromuscular Diseases (Marseille, 1982), Abstracts: no MO60.
143. Barois, interview with the author; G. Gatin, J. Bach, and Y. Rideau, 'Treatment of End Stage Respiratory Insufficiency in Duchenne's Muscular Dystrophy', V International Congress on Neuromuscular Disease (Marseille, 1982), Abstracts: no MO59.
144. Certain families were opposed to tracheostomy (INSERM Archives 9202; Barois, interview with the author).
145. This issue seemed to have played a significant role in a conflict that opposed Rideau to AMF's leaders in 1982 and brought about his resignation in 1983 (Rideau, interview with the author).
146. Vaincre les myopathies, 2 (1983), 2; Edrei, interview with the author.
147. C. Mandon and C. Colin, 'Les adolescents myopathes devenant jeunes adultes au "Brasset" ', Réadaptation, 278 (Numéro spécial) (1981), 24-9.
148. B. Barataud, 'Assistance respiratoire', Vaincre les myopathies, 3 (1983), 3.
149. Vaincre les myopathies, 9 (1984), 4.
150. Serratrice and Edrei, interviews with the author.
151. C. Edrei, 'Lenteurs', Vaincre les myopathies, 8 (1984), 9.
152. The first concerned rachidian surgery indications ('Myopathies de Duchenne: les interventions chirurugicales', Vaincre les myopathies, 13 (1985), 4-5).
153. Serratrice and Schmitt, interviews with the author; C. Hamon, 'La colère et la résignation', Vaincre les myopathies, 18 (1986), 2.
154. Vaincre les myopathies, 11 (1984), 8. The field of neuromuscular diseases has not become a true medical 'specialty'. Since 1995, however, Fardeau has organized a specialized course on neuromuscular diseases at the Hospital La Salpêtrière.
155. Interview with B. Barataud, Vaincre les myopathies, 28 (1988), 4.