NAME OF ORGANIZATION: Beyond Labels & Limitations
YouTube Channel: www.youtube.com/user/John71377
WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUS ON:
LGMD2A / Calpainopathy
IF YOU FOCUS ON A SUB-TYPE, IS THERE A REGISTRY AND HOW CAN PATIENTS JOIN?
Coalition to Cure Calpain 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.
WHAT INSPIRED THE CREATION OF YOUR ORGANIZATION:
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
WHAT IS YOUR ORGANIZATION’S MISSION:
To support rigorous scientific research for LGMD2A and to educate others on the disease course, as recounted through my personal experience.
WHAT SERVICES DOES YOUR ORGANIZATION PROVIDE:
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.
WHAT IS YOUR ORGANIZATION MOST PROUD OF:
Contributing $50,000 towards research.
What do you want the world to know about YOUR ORGANIZATION:
That if you want to make a difference you can do it by taking one step at a time.
HOW CAN PEOPLE BECOME INVOLVED IN SUPPORTING YOUR ORGANIZATION:
Donate and/or join the LGMD Facebook group. Donations can be made online.
WHAT IS THE BEST WAY TO CONTACT YOUR ORGANIZATION:
Contact John C. Graybill II by email at [email protected]
IS THERE ANYTHING ELSE YOU’D LIKE TO ADD?
The cure is out there.