{"id":58077,"date":"2023-12-12T17:00:00","date_gmt":"2023-12-12T17:00:00","guid":{"rendered":"https:\/\/www.africa-press.net\/cameroun\/politique\/reportage-au-coeur-de-lun-des-bras-armes-du-telethon"},"modified":"2023-12-12T22:17:21","modified_gmt":"2023-12-12T22:17:21","slug":"reportage-au-coeur-de-lun-des-bras-armes-du-telethon","status":"publish","type":"post","link":"https:\/\/www.africa-press.net\/cameroun\/toutes-les-actualites\/reportage-au-coeur-de-lun-des-bras-armes-du-telethon","title":{"rendered":"REPORTAGE. Au c\u0153ur de l\u2019un des \u00ab\u00a0bras arm\u00e9s\u00a0\u00bb du T\u00e9l\u00e9thon"},"content":{"rendered":"

Africa-Press – Cameroun. <\/strong><\/span>C\u2019est l\u2019un des \u00ab\u00a0trois bras arme\u0301s\u00a0\u00bb de l\u2019AFM-Te\u0301le\u0301thon, comme aime a\u0300 le pre\u0301senter Franc\u0327ois Lamy, vice-pre\u0301sident de l\u2019Association franc\u0327aise contre les myopathies (AFM) fonde\u0301e en 1987. Cre\u0301e\u0301 sous l\u2019impulsion de l\u2019association sur le site de l\u2019ho\u0302pital de la Pitie\u0301-Salpe\u0302trie\u0300re, a\u0300 Paris, l\u2019Institut de myologie est de\u0301die\u0301 a\u0300 l\u2019e\u0301tude du muscle et coordonne, autour des patients, la prise en charge me\u0301dicale et la recherche fondamentale sur les maladies neuromusculaires qui sont l\u2019objet principal du Te\u0301le\u0301thon.<\/p>\n

Le muscle \u00ab\u00a0dans tous ses e\u0301tats\u00a0\u00bb<\/p>\n

C\u2019est dans ce centre d\u2019expertise sur le muscle finance\u0301 a\u0300 50% par le Te\u0301le\u0301thon que sont effectue\u0301s depuis 1996 les diagnostics et la recherche fondamentale sur les pathologies neuromusculaires rares d\u2019origine ge\u0301ne\u0301tique.<\/p>\n

Il regroupe aujourd\u2019hui 300 experts sur quatre po\u0302les de\u0301die\u0301s aussi bien a\u0300 l\u2019analyse fine des tissus musculaires qu\u2019a\u0300 la conduite d\u2019essais cliniques ou a\u0300 la prise en charge et au suivi des patients (5000 consultations par an). Ce centre d\u2019excellence, que Sciences et avenir a pu visiter aux co\u0302te\u0301s du Pr Fabrice Chre\u0301tien, directeur de la strate\u0301gie scientifique, ambitionne de\u0301sormais de se muer en une Fondation de\u0301die\u0301e au muscle \u00ab\u00a0dans tous ses e\u0301tats\u00a0\u00bb, comme enjeu de sante\u0301 publique ; plus seulement pour les maladies rares donc.<\/p>\n

Le reportage de Sciences et Avenir<\/p>\n

Aux co\u0302te\u0301s de l\u2019Institut de myologie, l\u2019institut i-Stem de\u0301die\u0301 aux cellules souches et le Ge\u0301ne\u0301thon, laboratoire pionnier dans la conception de the\u0301rapies ge\u0301niques comple\u0300tent ce trio de la recherche a\u0300 l\u2019origine des avance\u0301es parmi les plus importantes en France dans le domaine de la ge\u0301ne\u0301tique: premie\u0300res cartes du ge\u0301nome humain entre 1992 et 1996, premiers succe\u0300s de the\u0301rapie ge\u0301nique de\u0300s 2000, ame\u0301lioration du diagnostic des maladies ge\u0301ne\u0301tiques rares et de nombreux essais cliniques.<\/p>\n

Si le succe\u0300s me\u0301diatique \u2013 et donc financier \u2013 du Te\u0301le\u0301thon, plus grosse collecte populaire au monde concentrant 3% des dons annuels des Franc\u0327ais, est re\u0301gulie\u0300rement cible\u0301 pour \u00ab\u00a0vampiriser la ge\u0301ne\u0301rosite\u0301\u00a0\u00bb (Pierre Berge\u0301, pre\u0301sident du Sidaction en 2009) voire me\u0302me pour conduire des essais sur l\u2019animal, les succe\u0300s scientifiques et me\u0301dicaux sont incontestables. Et plus encore ces cinq dernie\u0300res anne\u0301es alors que les techniques de the\u0301rapies ge\u0301niques arrivent a\u0300 maturite\u0301.<\/p>\n

Non pas gra\u0302ce aux ciseaux mole\u0301culaires CRISPR-Cas9 qui permettent de corriger directement un ge\u0300ne, mais bien a\u0300 la technique des vecteurs viraux de\u0301veloppe\u0301e au de\u0301but des anne\u0301es 2000: il s\u2019agit d\u2019utiliser un virus rendu inoffensif (des ade\u0301novirus) pour lui adjoindre un ge\u0300ne me\u0301dicament. Le virus ainsi e\u0301quipe\u0301 est re\u0301injecte\u0301 chez les patients pour diffuser le ge\u0300ne manquant dans l\u2019organisme.<\/p>\n

Une re\u0301volution dans le traitement de l’amyotrophie spinale<\/p>\n

C\u2019est ainsi que l\u2019amyotrophie spinale, l\u2019une des maladies \u00ab\u00a0symbole\u00a0\u00bb du Te\u0301le\u0301thon avec la myopathie de Duchenne (toujours sans traitement, elle), a connu une re\u0301volution avec l\u2019autorisation en 2019 d\u2019une the\u0301rapie ge\u0301nique redoutable d\u2019efficacite\u0301. Capable me\u0302me d\u2019empe\u0302cher la pathologie d\u2019apparai\u0302tre pour peu qu\u2019elle soit administre\u0301e de\u0300s les premie\u0300res semaines de vie de l\u2019enfant touche\u0301.<\/p>\n

C\u2019est ce qui est arrive\u0301 a\u0300 Ibrahima, 2 ans et demi aujourd\u2019hui, qui vit comme n\u2019importe quel petit garc\u0327on de son a\u0302ge. Il y a 20 ans, il n\u2019aurait pas atteint cet a\u0302ge. Touchant pre\u0300s d\u2019une centaine d\u2019enfants chaque anne\u0301e en France, l\u2019amyotrophie spinale est due a\u0300 des anomalies situe\u0301es sur le ge\u0300ne SMN1 qui conduisent a\u0300 la de\u0301ge\u0301ne\u0301rescence des motoneurones qui commandent le mouvement des muscles. Aujourd\u2019hui, elle peut donc e\u0302tre traite\u0301e voir me\u0302me empe\u0302che\u0301e.<\/p>\n

Idem pour la myopathie myotubulaire dont souffrait Jules, 6 ans aujourd\u2019hui. Incapable de parler, ou de respirer et de s\u2019alimenter sans assistance jusqu\u2019a\u0300 ces 4 ans, le garc\u0327on pre\u0301sente\u0301 dans notre reportage a e\u0301galement rec\u0327u une the\u0301rapie ge\u0301nique mise au point dans les laboratoires du Ge\u0301ne\u0301thon, qui lui a sauve\u0301 la vie.<\/p>\n

De fait, s’il a e\u0301te\u0301 reproche\u0301 au Te\u0301le\u0301thon (autre critique re\u0301currente) de verser dans le mise\u0301rabilisme en mettant en avant des enfants gravement atteints pour re\u0301colter des dons, il y a matie\u0300re a\u0300 se re\u0301jouir de voir que les progre\u0300s de la ge\u0301ne\u0301tique permettent aujourd’hui de montrer ceux sauve\u0301s gra\u0302ce a\u0300 la recherche.<\/p>\n

Pour plus d’informations et d’analyses sur la Cameroun<\/a>, suivez Africa-Press<\/a><\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"

Africa-Press – Cameroun. C\u2019est l\u2019un des \u00ab\u00a0trois bras arme\u0301s\u00a0\u00bb de l\u2019AFM-Te\u0301le\u0301thon, comme aime a\u0300 le pre\u0301senter Franc\u0327ois Lamy, vice-pre\u0301sident de l\u2019Association franc\u0327aise contre les myopathies (AFM) fonde\u0301e en 1987. Cre\u0301e\u0301 sous l\u2019impulsion de l\u2019association sur le site de l\u2019ho\u0302pital de la Pitie\u0301-Salpe\u0302trie\u0300re, a\u0300 Paris, l\u2019Institut de myologie est de\u0301die\u0301 a\u0300 l\u2019e\u0301tude du muscle et coordonne, […]<\/p>\n","protected":false},"author":82,"featured_media":58076,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[22,10],"tags":[36,50,49],"class_list":["post-58077","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-divers","category-toutes-les-actualites","tag-africa-press","tag-africa-press-cameroun","tag-cameroun"],"yoast_head":"\nREPORTAGE. 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