NOMBRE DE LA ORGANIZACIÓN: Beyond Labels & Limitations
PÁGINA 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 / Calpainopatía
SI SE CENTRA EN UN SUBTIPO, ¿EXISTE UN REGISTRO Y CÓMO PUEDEN INSCRIBIRSE LOS PACIENTES?
Coalición para Curar la Calpaína 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.
QUÉ INSPIRÓ LA CREACIÓN DE SU ORGANIZACIÓN:
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
CUÁL ES LA MISIÓN DE SU ORGANIZACIÓN:
To support rigorous scientific research for LGMD2A and to educate others on the disease course, as recounted through my personal experience.
QUÉ SERVICIOS PRESTA SU ORGANIZACIÓN:
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.
DE QUÉ SE SIENTE MÁS ORGULLOSA SU ORGANIZACIÓN
Contributing $50,000 towards research.
¿Qué quiere que el mundo sepa sobre SU ORGANIZACIÓN?:
That if you want to make a difference you can do it by taking one step at a time.
CÓMO PUEDE PARTICIPAR LA GENTE EN EL APOYO A SU ORGANIZACIÓN:
Donate and/or join the LGMD Facebook group. Donations can be made online.
CUÁL ES LA MEJOR MANERA DE PONERSE EN CONTACTO CON SU ORGANIZACIÓN:
Contact John C. Graybill II by email at jcg713@aol.com
¿LE GUSTARÍA AÑADIR ALGO MÁS?
The cure is out there.
