NOME DELL'ORGANIZZAZIONE:          Beyond Labels & Limitations 

SITO WEB:              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 / Calpainopatia

SE CI SI CONCENTRA SU UN SOTTOTIPO, ESISTE UN REGISTRO E COME POSSONO ISCRIVERSI I PAZIENTI?

Coalizione per la cura della calpaina 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.

COSA HA ISPIRATO LA CREAZIONE DELLA VOSTRA ORGANIZZAZIONE:

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

QUAL È LA MISSIONE DELLA VOSTRA ORGANIZZAZIONE:

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

QUALI SERVIZI FORNISCE LA VOSTRA ORGANIZZAZIONE:

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.

DI COSA È PIÙ ORGOGLIOSA LA VOSTRA ORGANIZZAZIONE:

Contributing $50,000 towards research.

Cosa volete che il mondo sappia della vostra organizzazione?:

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

COME SI PUÒ PARTECIPARE AL SOSTEGNO DELLA VOSTRA ORGANIZZAZIONE:

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

QUAL È IL MODO MIGLIORE PER CONTATTARE LA VOSTRA ORGANIZZAZIONE:

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

C'È QUALCOS'ALTRO CHE VORREBBE AGGIUNGERE?

The cure is out there.