NAME OF ORGANIZATION: CureLGMD2i Foundation
WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON:
LGMD2i and The Dystroglycanopathies (FKRP)
IF YOU FOCUS ON A SUB-TYPE, IS THERE A REGISTRY AND HOW CAN PATIENTS JOIN?
FKRP Registry at https://www.fkrp-registry.org
Is your organization a Non-Profit? If so, what type:
Yes, U.S.-based 501 (c)(3) tax-exempt public charity
WHAT INSPIRED THE CREATION OF YOUR ORGANIZATION:
CureLGMD2i was initially founded as the Samantha J. Brazzo Foundation by the Brazzo family in 2011, after their young daughter, Samantha, was diagnosed with LGMD2i. They realized that there were no other organizations raising funds specifically for research for 2i, so they created this non-profit foundation to raise money and awareness toward a cure for this rare and progressive condition.
wHAT IS YOUR ORGANIZATION’S MISSION:
To raise funds to spread awareness and support scientific research that is geared directly toward creating a successful treatment or cure for LGMD2i.
WHAT SERVICES DOES YOUR ORGANIZATION PROVIDE:
Providing financial support for the Dystroglycanopathy Family Conference in Iowa and research projects to build a better understanding of the progression of LGMD2i, drug development and building a successful gene therapy program for LGMD2i.
To date, the CureLGMD2i Foundation has provided over $400,000 to research programs that are working aggressively to establish a treatment for LGMD2i.
WHAT IS YOUR ORGANIZATION MOST PROUD OF:
We most recently sponsored an “Into the Clinic” gene therapy meeting that was held at UMass that brought together top scientists and companies in the field of 2i to provide an update on pre-clinical work and clinical trial readiness. This meeting resulted in the creation of an LGMD2i Gene Therapy Steering Group, which be working on helping to establish a future clinical trial.
What do you want the world to know about YOUR ORGANIZATION:
We are the only organization that accepts tax-deductible donations with 100% going directly to research related projects for Limb Girdle Muscular Dystrophy Type 2I.
HOW CAN PEOPLE BECOME INVOLVED IN SUPPORTING YOUR ORGANIZATION:
Right now we are having a major push on Facebook for fundraising to support a future gene therapy clinical trial in LGMD2i. “Spring into Action” by creating your own Facebook fundraiser – tell your circle of friends/family how LGMD2i has affected you, what you would do when you are cured, and ask for donations to support CureLGMD2i. You can also share the donation tab to our website at https://curelgmd2i.com/donations
WHAT IS THE BEST WAY TO CONTACT YOUR ORGANIZATION:
Contact Kelly Brazzo at [email protected] or message us through our Facebook page at https://www.facebook.com/CureLGMD2i
IS THERE ANYTHING ELSE YOU’D LIKE TO ADD?
If you have a confirmed diagnosis of LGMD2i – please make sure to register in the Global FKRP Registry at https://www.fkrp-registry.org #Strengthinnumbers!