{"id":3732,"date":"2020-10-26T21:27:47","date_gmt":"2020-10-27T02:27:47","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3732"},"modified":"2024-02-09T14:24:27","modified_gmt":"2024-02-09T14:24:27","slug":"organization-stichting-spierkracht","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/lgmd2d\/2020\/10\/26\/organization-stichting-spierkracht\/","title":{"rendered":"ORGANISATION : Stichting Spierkracht"},"content":{"rendered":"

\"\"<\/a><\/p>\n

L'ORGANISATION LGMD :\u00a0 \u00a0\u00a0\u00a0 <\/strong>Stichting Spierkracht<\/p>\n

SITE WEB :<\/strong>\u00a0 \u00a0www.stichtingSpierKracht.com<\/a><\/p>\n

FACEBOOK :\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong>https:\/\/www.facebook.com\/stichtingspierkracht.nl<\/a><\/p>\n

INSTAGRAM :\u00a0\u00a0\u00a0\u00a0 <\/strong> https:\/\/www.instagram.com\/stichting_spierkracht<\/a><\/p>\n

QUEL EST LE SOUS-TYPE DE LGMD SUR LEQUEL VOTRE ORGANISATION SE CONCENTRE :\u00a0 <\/strong><\/p>\n

Nous nous concentrons sur les maladies li\u00e9es au LGMD2D \/ R3 Alpha Sarcoglycan.<\/p>\n

SI VOUS VOUS CONCENTREZ SUR UN SOUS-TYPE, EXISTE-T-IL UN REGISTRE ET COMMENT LES PATIENTS PEUVENT-ILS S'Y INSCRIRE ? <\/strong><\/p>\n

Nous conseillons \u00e0 tous les patients atteints de LGMD2D de s'enregistrer : https:\/\/lgmd2d.org\/patient-resources\/register\/. Il est tr\u00e8s important d'avoir un diagnostic confirm\u00e9 par l'ADN. Si votre mutation n'est pas confirm\u00e9e, cela peut avoir un impact sur votre traitement m\u00e9dical.<\/p>\n

Votre organisation est-elle \u00e0 but non lucratif ? Si oui, de quel type :\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n

Oui, nous sommes une organisation \u00e0 but non lucratif bas\u00e9e aux Pays-Bas. Nous n'avons que des b\u00e9n\u00e9voles et pas de frais g\u00e9n\u00e9raux.<\/p>\n

CE QUI A INSPIR\u00c9 LA CR\u00c9ATION DE VOTRE ORGANISATION<\/strong>:<\/p>\n

Nous avons re\u00e7u la fondation SpierKracht en cadeau de No\u00ebl. Notre fils a \u00e9t\u00e9 diagnostiqu\u00e9 LGMD2d en 2006. Notre fille a\u00een\u00e9e ayant \u00e9t\u00e9 emport\u00e9e par une maladie cardiaque, nous \u00e9tions d\u00e9termin\u00e9s \u00e0 tout faire pour nos enfants et avons voyag\u00e9 pendant de nombreuses ann\u00e9es dans les meilleurs h\u00f4pitaux pour enfants. Des amis ont organis\u00e9 des marathons et autres collectes de fonds pour couvrir les co\u00fbts et nous avons organis\u00e9 des banquets de bienfaisance.<\/p>\n

QUELLE EST LA MISSION DE VOTRE ORGANISATION :<\/strong><\/p>\n

Tous les patients m\u00e9ritent les meilleurs soins, c'est pourquoi nous avons d\u00e9cid\u00e9 de nous adresser \u00e0 tous les patients et \u00e0 leurs familles diagnostiqu\u00e9s avec la LGMD2D aux Pays-Bas. Nous nous concentrons principalement sur la sensibilisation, l'\u00e9ducation, la r\u00e9solution de probl\u00e8mes et tout ce que vous devez savoir avant de vous inscrire \u00e0 un essai. Comme les Pays-Bas sont un tr\u00e8s petit pays et que la LGMD2D est tr\u00e8s rare, nous nous adressons \u00e0 l'ensemble de la population. Nous avons r\u00e9cemment r\u00e9alis\u00e9 une vid\u00e9o sur trois personnes vivant avec la LGMD sur trois continents diff\u00e9rents.<\/p>\n

QUELS SONT LES SERVICES OFFERTS PAR VOTRE ORGANISATION :<\/strong><\/p>\n

Des informations fiables pour les proches des patients atteints de LGMD2D sur tous les sujets ad\u00e9quats aux diff\u00e9rents stades de la vie des patients. Nous disposons \u00e9galement d'un expert patient qualifi\u00e9 et nous travaillons sur le diagnostic pr\u00e9coce et les conseils aux patients, non seulement pour les patients n\u00e9erlandais, mais aussi dans le monde entier.<\/p>\n

DE QUOI VOTRE ORGANISATION EST-ELLE LA PLUS FI\u00c8RE ?<\/strong><\/p>\n

Nous sommes tr\u00e8s fiers de toutes les personnes que nous connaissons, des familles qui vivent avec le diagnostic de LGMD2D, mais nous sommes \u00e9galement tr\u00e8s fiers de toutes les personnes qui consacrent leur vie \u00e0 la recherche d'un rem\u00e8de et \u00e0 la fourniture des meilleurs soins aux patients. Le bon diagnostic a ouvert la voie \u00e0 un essai g\u00e9n\u00e9tique et nous attendons avec impatience un traitement. D'ici l\u00e0, nous ferons tout ce qui est en notre pouvoir pour guider les familles sur le plan pratique, mais aussi pour ouvrir la voie \u00e0 un traitement et \u00e0 un acc\u00e8s mondial.<\/p>\n

Que voulez-vous que le monde sache \u00e0 propos de VOTRE ORGANISATION ?<\/strong>:<\/p>\n

Obtenir le diagnostic LGMD2D n'est pas la fin du monde. C'est un parcours sem\u00e9 d'emb\u00fbches, mais il s'accompagne d'une formidable communaut\u00e9 LGMD2D. La maladie se manifeste diff\u00e9remment chez chaque patient, mais nous avons beaucoup en commun et nous pouvons tout faire ensemble. Ne laissez pas la maladie vous d\u00e9finir ou vous limiter. Vous \u00eates qui vous \u00eates et vous pouvez toujours poursuivre vos r\u00eaves.<\/p>\n

COMMENT LES GENS PEUVENT-ILS S'IMPLIQUER DANS LE SOUTIEN DE VOTRE ORGANISATION :<\/strong><\/p>\n

Nous sommes toujours \u00e0 la recherche d'amis qui souhaitent organiser une activit\u00e9 de collecte de fonds. En raison de la pand\u00e9mie,<\/p>\n

La plupart des familles sont isol\u00e9es et nous n'avons pas pu organiser notre banquet annuel en 2020 en raison du coronavirus. Tout don, petit ou grand, sera utilis\u00e9 pour aider les familles atteintes de LGMD2D \u00e0 financer des soins m\u00e9dicaux ou, par exemple, des adaptations de leur logement.<\/p>\n

QUEL EST LE MEILLEUR MOYEN DE CONTACTER VOTRE ORGANISATION :<\/strong><\/p>\n

Envoyez un courriel \u00e0 notre expert des patients \u00e0 l'adresse stichtingspierkracht@ziggo.nl, ou remplissez notre formulaire de contact sur notre site web : http:\/\/stichtingspierkracht.com\/<\/p>\n

Y A-T-IL AUTRE CHOSE QUE VOUS AIMERIEZ AJOUTER ?<\/strong><\/p>\n

Il y a 10 ans, il n'y avait pas de traitement disponible et les m\u00e9decins se contentaient de suivre l'\u00e9volution de la maladie. L'essai g\u00e9n\u00e9tique du professeur Jerry Mendell en 2015 pour la LGMD2D a eu des r\u00e9sultats positifs et il y a maintenant des recherches prometteuses pour les LGMD2 A, B, C, E et I. J'attends avec impatience le moment, quelque part dans un avenir proche, o\u00f9 le traitement g\u00e9n\u00e9tique sera accessible \u00e0 tous, et qui sait o\u00f9 en sera le domaine neuromusculaire dans 10 ans. Mais en 2020, il y aura encore des m\u00e9decins qui donneront un diagnostic \u00e0 leurs patients sans leur parler des progr\u00e8s de la recherche, y compris de la th\u00e9rapie g\u00e9nique. Votre traitement vous concerne, devenez un expert et entrez en contact avec un membre du conseil consultatif communautaire pour tout type de LGMD.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":4499,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,28,95],"tags":[],"class_list":["post-3732","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-lgmd2d","category-organization"],"acf":[],"yoast_head":"\nORGANIZATION: Stichting Spierkracht - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.lgmd-info.org\/fr\/lgmd2d\/2020\/10\/26\/organization-stichting-spierkracht\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: Stichting Spierkracht - 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