{"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\/de\/lgmd2a\/2018\/09\/21\/beyond-labels-limitations\/","title":{"rendered":"ORGANISATION: Jenseits von Etiketten und Grenzen"},"content":{"rendered":"
\"\"<\/figure>\n\n\n

NAME DER ORGANISATION<\/strong>: Jenseits von Etiketten und Beschr\u00e4nkungen\u00a0<\/p>\n

WEBSITE:<\/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

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

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

AUF WELCHEN UNTERTYP VON LGMD KONZENTRIERT SICH IHRE ORGANISATION:\u00a0 <\/strong><\/p>\n

LGMD2A \/ Kalpainopathie<\/p>\n

WENN SIE SICH AUF EINEN UNTERTYP KONZENTRIEREN, GIBT ES DANN EIN REGISTER UND WIE K\u00d6NNEN SICH PATIENTEN ANSCHLIESSEN? <\/strong><\/p>\n

Koalition zur Heilung von Calpain 3<\/a> unterh\u00e4lt die Globales LGMD2A-Patienten-Register<\/a> die online abgerufen werden k\u00f6nnen.<\/p>\n

IST IHRE ORGANISATION EINE GEMEINN\u00dcTZIGE EINRICHTUNG:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n

Ja, wir sind eine 501(c)3 gemeinn\u00fctzige Organisation.<\/p>\n

WAS HAT SIE BEI DER GR\u00dcNDUNG IHRER ORGANISATION INSPIRIERT?<\/strong>:<\/p>\n

Ich, John C. Graybill II, habe BL&L aus zwei Gr\u00fcnden gegr\u00fcndet. Der erste Grund war, Geld f\u00fcr die Forschung zu sammeln. Von 1995 bis 2006 ging ich jedes Jahr zu meinem Neurologen und er sagte mir, dass es keine Neuigkeiten in Bezug auf eine Behandlung g\u00e4be. Das wollte ich \u00e4ndern. Der zweite Grund, warum ich BL&L gegr\u00fcndet habe, war, durch meine Videos das Bewusstsein f\u00fcr die Krankheit zu sch\u00e4rfen. Zu dieser Zeit gab es niemanden, der seine Fortschritte bei LGMD aufzeichnete, und es gab niemanden, mit dem ich in Kontakt treten konnte. Indem ich Videos drehte, \u00f6ffnete ich anderen die T\u00fcr, sich mit mir zu verbinden und sich nicht allein zu f\u00fchlen. Meine Videos sind verf\u00fcgbar auf YouTube<\/a><\/p>\n

WAS IST DER AUFTRAG IHRER ORGANISATION?<\/strong><\/p>\n

Unterst\u00fctzung einer rigorosen wissenschaftlichen Forschung f\u00fcr LGMD2A und Aufkl\u00e4rung \u00fcber den Krankheitsverlauf, wie er sich aus meiner pers\u00f6nlichen Erfahrung ergibt.<\/p>\n

WELCHE DIENSTLEISTUNGEN BIETET IHRE ORGANISATION AN?<\/strong><\/p>\n

Online-Unterst\u00fctzungssystem f\u00fcr Gleichaltrige \u00fcber Facebook. Die Gruppe, die ich gegr\u00fcndet habe, hei\u00dft \"Gliederg\u00fcrtel-Muskeldystrophie: Jenseits von Bezeichnungen und Beschr\u00e4nkungen<\/a>\" und hat derzeit \u00fcber 3.000 Mitglieder aus der ganzen Welt. Die Gruppe ist offen f\u00fcr alle Menschen mit jeder Form von LGMD und in jedem Stadium des Krankheitsprozesses.<\/p>\n

WORAUF IST IHRE ORGANISATION AM MEISTEN STOLZ:<\/strong><\/p>\n

Beitrag von $50.000 zur Forschung.<\/p>\n

Was m\u00f6chten Sie, dass die Welt \u00fcber IHRE ORGANISATION erf\u00e4hrt?<\/strong>:<\/p>\n

Wenn man etwas bewirken will, kann man einen Schritt nach dem anderen machen.<\/p>\n

WIE K\u00d6NNEN SICH MENSCHEN AN DER UNTERST\u00dcTZUNG IHRER ORGANISATION BETEILIGEN?<\/strong><\/p>\n

Spenden Sie und\/oder treten Sie der LGMD-Facebook-Gruppe bei. Spenden k\u00f6nnen get\u00e4tigt werden online<\/a>.<\/p>\n

WIE SIE IHRE ORGANISATION AM BESTEN KONTAKTIEREN K\u00d6NNEN:<\/strong><\/p>\n

Kontaktieren Sie John C. Graybill II per E-Mail unter jcg713@aol.com<\/p>\n

GIBT ES SONST NOCH ETWAS, DAS SIE HINZUF\u00dcGEN M\u00d6CHTEN?<\/strong><\/p>\n

Das Heilmittel ist da drau\u00dfen.<\/p>\n

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

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