{"id":2259,"date":"2018-09-21T11:47:18","date_gmt":"2018-09-21T16:47:18","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2259"},"modified":"2018-09-21T11:47:18","modified_gmt":"2018-09-21T16:47:18","slug":"beyond-labels-limitations","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/lgmd2a\/2018\/09\/21\/beyond-labels-limitations\/","title":{"rendered":"ORGANISATION : Au-del\u00e0 des \u00e9tiquettes et des limites"},"content":{"rendered":"
\"\"<\/figure>\n\n\n

NOM DE L'ORGANISATION<\/strong>: Au-del\u00e0 des \u00e9tiquettes et des limites\u00a0<\/p>\n

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

FACEBOOK :\u00a0\u00a0 \u00a0\u00a0<\/strong>https:\/\/www.facebook.com\/groups\/29111827568\/<\/a><\/p>\n

Cha\u00eene YouTube :\u00a0 \u00a0<\/strong>www.youtube.com\/user\/John71377<\/a><\/p>\n

\u00a0<\/strong><\/p>\n

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

LGMD2A \/ Calpa\u00efnopathie<\/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

Coalition pour la gu\u00e9rison de la calpa\u00efne 3<\/a> maintient le Registre mondial des patients atteints de LGMD2A<\/a> qui est accessible en ligne.<\/p>\n

VOTRE ORGANISATION EST-ELLE \u00c0 BUT NON LUCRATIF ?\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n

Oui, nous sommes une organisation \u00e0 but non lucratif 501(c)3.<\/p>\n

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

Moi, John C. Graybill II, j'ai cr\u00e9\u00e9 la BL&L pour deux raisons. La premi\u00e8re \u00e9tait de collecter des fonds pour la recherche. De 1995 \u00e0 2006, chaque ann\u00e9e, j'allais voir mon neurologue et il me disait qu'il n'y avait aucune nouvelle en termes de traitement. Je voulais changer cela. La deuxi\u00e8me raison pour laquelle j'ai cr\u00e9\u00e9 BL&L \u00e9tait de sensibiliser le public gr\u00e2ce \u00e0 mes vid\u00e9os. \u00c0 l'\u00e9poque, personne n'enregistrait l'\u00e9volution de la LGMD et il n'y avait personne avec qui je pouvais entrer en contact. En r\u00e9alisant des vid\u00e9os, j'ai ouvert la porte \u00e0 d'autres personnes pour qu'elles puissent entrer en contact avec moi et ne pas se sentir seules. Mes vid\u00e9os sont disponibles sur YouTube<\/a><\/p>\n

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

Soutenir la recherche scientifique rigoureuse sur la LGMD2A et informer les autres sur l'\u00e9volution de la maladie, telle qu'elle est relat\u00e9e dans mon exp\u00e9rience personnelle.<\/p>\n

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

Syst\u00e8me de soutien en ligne par les pairs via Facebook. Le groupe que j'ai cr\u00e9\u00e9 est \"Dystrophie musculaire des ceintures : Au-del\u00e0 des \u00e9tiquettes et des limites<\/a>\"et compte actuellement plus de 3 000 membres dans le monde entier. Le groupe est ouvert \u00e0 toute personne atteinte d'une forme quelconque de LGMD, quel que soit le stade d'\u00e9volution de la maladie.<\/p>\n

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

Contribution de $50 000 \u00e0 la recherche.<\/p>\n

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

Que si vous voulez changer les choses, vous pouvez le faire en faisant un pas apr\u00e8s l'autre.<\/p>\n

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

Faites un don et\/ou rejoignez le groupe Facebook LGMD. Les dons peuvent \u00eatre faits en ligne<\/a>.<\/p>\n

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

Contactez John C. Graybill II par courrier \u00e9lectronique \u00e0 l'adresse suivante : jcg713@aol.com<\/p>\n

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

Le rem\u00e8de existe.<\/p>\n

\u00a0<\/p>","protected":false},"excerpt":{"rendered":"

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