НАЗВАНИЕ ОРГАНИЗАЦИИ:          Beyond Labels & Limitations 

ВЕБ-САЙТ:              www.BeyondLabelsLimitations.com

FACEBOOK:     https://www.facebook.com/groups/29111827568/

YouTube Channel:   www.youtube.com/user/John71377

 

WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUS ON: 

LGMD2A / Calpainopathy

ЕСЛИ ВЫ СОСРЕДОТОЧИТЕСЬ НА КАКОМ-ТО ПОДТИПЕ, СУЩЕСТВУЕТ ЛИ РЕГИСТР И КАК ПАЦИЕНТЫ МОГУТ ПРИСОЕДИНИТЬСЯ К НЕМУ?

Коалиция за лечение кальпаином 3 maintains the Global LGMD2A Patient Registry which can be accessed online.

IS YOUR ORGANIZATION A NON-PROFIT:        

Yes, we are a 501(c)3 non-profit organization.

ЧТО ПОСЛУЖИЛО ТОЛЧКОМ К СОЗДАНИЮ ВАШЕЙ ОРГАНИЗАЦИИ:

I, John C.Graybill II, established BL&L for two reasons. The first reason was to raise money for research. From 1995 until 2006 every year I’d go see my neurologist and he would tell me there isn’t any news in terms of a treatment. I wanted to change that. The second reason I established BL&L was to raise awareness through my videos. At the time there wasn’t anyone recording their progress of LGMD and there wasn’t anyone out there that I could connect with. By making videos I opened the door for others to connect with me and not feel alone.  My videos are available on YouTube

КАКОВА МИССИЯ ВАШЕЙ ОРГАНИЗАЦИИ:

To support rigorous scientific research for LGMD2A and to educate others on the disease course, as recounted through my personal experience.

КАКИЕ УСЛУГИ ПРЕДОСТАВЛЯЕТ ВАША ОРГАНИЗАЦИЯ:

Online peer support system through Facebook.  The group that I established is “Limb Girdle Muscular Dystrophy:  Beyond Labels and Limitations” and currently has over 3,000 members from around the world.  The group is open to anyone with any form of LGMD and at any stage of the disease process.

ЧЕМ ВАША ОРГАНИЗАЦИЯ ГОРДИТСЯ БОЛЬШЕ ВСЕГО:

Contributing $50,000 towards research.

Что вы хотите, чтобы мир узнал о ВАШЕЙ ОРГАНИЗАЦИИ:

That if you want to make a difference you can do it by taking one step at a time.

КАК ЛЮДИ МОГУТ ПРИНЯТЬ УЧАСТИЕ В ПОДДЕРЖКЕ ВАШЕЙ ОРГАНИЗАЦИИ:

Donate and/or join the LGMD Facebook group.  Donations can be made online.

КАК ЛУЧШЕ ВСЕГО СВЯЗАТЬСЯ С ВАШЕЙ ОРГАНИЗАЦИЕЙ:

Contact John C. Graybill II  by  email at  jcg713@aol.com

ЕСТЬ ЛИ ЕЩЕ ЧТО-НИБУДЬ, ЧТО ВЫ ХОТЕЛИ БЫ ДОБАВИТЬ?

The cure is out there.