组织名称: Beyond Labels & Limitations
网站： 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
如果您专注于某一亚型，是否有登记处，患者如何加入？
治疗钙蛋白酶联盟 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.
创建贵组织的灵感来源:
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
贵组织的使命是什么？
To support rigorous scientific research for LGMD2A and to educate others on the disease course, as recounted through my personal experience.
贵组织提供哪些服务？
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.
贵组织最引以为豪的是什么？
Contributing $50,000 towards research.
您希望世界了解贵组织的哪些方面？:
That if you want to make a difference you can do it by taking one step at a time.
人们如何参与支持贵组织：
Donate and/or join the LGMD Facebook group. Donations can be made online.
联系贵组织的最佳方式是什么？
Contact John C. Graybill II by email at jcg713@aol.com
您还有什么要补充的吗？
The cure is out there.
