NAME OF ORGANIZATION:         LGMD2L Foundation

WEBSITE:              LGMD2L-Foundation.org

Facebook:        Https://www.facebook.com/LGMD2L-Foundation

Twitter:             @LGMD2L

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.

 

* * * To read more “LGMD Spotlight Interviews” or to volunteer to be featured in an upcoming interview, please visit our website at  http://lgmd-info.org/spotlight-interviews

ORGANIZATION: LGMD2L Foundation
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