NOME DA ORGANIZAÇÃO: Beyond Labels & Limitations
SÍTIO 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 NOS CONCENTRARMOS NUM SUBTIPO, EXISTE UM REGISTO E COMO PODEM OS DOENTES ADERIR?
Coligação para a cura da 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.
O QUE INSPIROU A CRIAÇÃO DA SUA ORGANIZAÇÃO:
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 É A MISSÃO DA SUA ORGANIZAÇÃO:
To support rigorous scientific research for LGMD2A and to educate others on the disease course, as recounted through my personal experience.
QUE SERVIÇOS PRESTA A SUA ORGANIZAÇÃO:
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 QUE É QUE A SUA ORGANIZAÇÃO MAIS SE ORGULHA:
Contributing $50,000 towards research.
O que quer que o mundo saiba sobre a SUA ORGANIZAÇÃO:
That if you want to make a difference you can do it by taking one step at a time.
COMO É QUE AS PESSOAS SE PODEM ENVOLVER NO APOIO À SUA ORGANIZAÇÃO:
Donate and/or join the LGMD Facebook group. Donations can be made online.
QUAL É A MELHOR FORMA DE CONTACTAR A SUA ORGANIZAÇÃO:
Contact John C. Graybill II by email at jcg713@aol.com
HÁ MAIS ALGUMA COISA QUE GOSTARIA DE ACRESCENTAR?
The cure is out there.
