WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON:
We focus on Limb Girdle Muscular Dystrophy type 2L (LGMD2L)
IF YOU FOCUS ON A SUB-TYPE, IS THERE A REGISTRY AND HOW CAN PATIENTS JOIN?
Yes, the Patient Registry for LGMD2L is accessible via our website at www.lgmd2l-foundation.org/patient-registration
Is your organization a Non-Profit? If so, what type:
Yes, is registered the State of Illinois and we are pursuing 501(c)(3) status.
WHAT INSPIRED THE CREATION OF YOUR ORGANIZATION:
Primarily, the need to develop a patient registry for individuals diagnosed with LGMD2L in order to be prepared for clinical trials, when they become available.
wHAT IS YOUR ORGANIZATION’S MISSION:
The LGMD2L Foundation’s goal is to unite people affected by this rare disease. Also, provide an open forum to connect, discuss and ultimately build a community of LGMD2L members. Although our disease is rare and poorly understood, we have established this foundation to build a database of LGMD2L patients for future scientific research and clinical trials. The only way to bring about change is to unify those who are driven for a cure!
WHAT SERVICES DOES YOUR ORGANIZATION PROVIDE:
Registry, information via website and social media. Support as needed and connections to other community resources.
WHAT IS YOUR ORGANIZATION MOST PROUD OF:
Getting our non-profit status and starting the website with the registry.
What do you want the world to know about YOUR ORGANIZATION:
We are developing great connections in this area and we hope to build a registry that will help us when clinical trials are ready to go.
HOW CAN PEOPLE BECOME INVOLVED IN SUPPORTING YOUR ORGANIZATION:
Our website will have information to contact us and eventually to make tax-deductible donations that we will need to stay connected to the information at events and conferences.
WHAT IS THE BEST WAY TO CONTACT YOUR ORGANIZATION:
Our website has our email and phone number. Please reach out anytime. You can also always send us a message via Facebook or Twitter.
IS THERE ANYTHING ELSE YOU’D LIKE TO ADD? We are looking forward to success in achieving cures and treatments for LGMD2L.
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