ORGANIZATION: Beyond Labels & Limitations
NAME OF ORGANIZATION: Beyond Labels & Limitations WEBSITE: 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 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 [...]
ORGANIZATION: LGMD2L Foundation
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, U.S.-based 501 (c)(3) tax-exempt public charity. WHAT INSPIRED THE CREATION OF YOUR ORGANIZATION: Primarily, the need to develop a patient registry for individuals diagnosed with LGMD2L in order [...]
ORGANIZATION: Jain Foundation
NAME OF ORGANIZATION: Jain Foundation WEBSITE: www.jain-foundation.org FACEBOOK: www.facebook.com/JainFoundation/ TWITTER: https://twitter.com/JainFoundation WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON: Dysferlinopathy (LGMD2B/Miyoshi Myopathy Type 1), which are caused by mutations in the dysferlin gene. IF YOU FOCUS ON A SUB-TYPE, IS THERE A REGISTRY AND HOW CAN PATIENTS JOIN? Yes, we have a registry for patients with dysferlinopathy. We encourage patients to contact us at [email protected]; more details about the registry can be found at https://www.jain-foundation.org/patient-physician-resources/patient-registration Is your organization a Non-Profit? If so, what type: We are incorporated as a private non-profit foundation in the U.S. As such, we don’t [...]
ORGANIZATION: The Speak Foundation
NAME OF ORGANIZATION: The Speak Foundation WEBSITE: www.thespeakfoundation.com FACEBOOK: www.facebook.com/THESPEAKFOUNDATION WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON: All forms of neuromuscular diseases including LGMD. Is your organization a Non-Profit? If so, what type: U.S.-based 501 (c)(3) tax-exempt public charity. All donations are tax deductible. WHAT INSPIRED THE CREATION OF YOUR ORGANIZATION: There was a blank space of unaddressed needs in the muscular dystrophy community over ten years ago. We began in 2008 to address a variety of areas. Our name is based on a verse in the Bible "Speak up for those without a voice." Our non-profit [...]
ORGANIZATION: CureLGMD2i Foundation
NAME OF ORGANIZATION: CureLGMD2i Foundation WEBSITE: www.curelgmd2i.com FACEBOOK: www.facebook.com/CureLGMD2i/ 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 [...]
ORGANIZATION: Coalition to Cure Calpain 3
NAME OF ORGANIZATION: Coalition to Cure Calpain 3 WEBSITE: CureCalpain3.org FACEBOOK: Coalition to Cure Calpain 3: Overcoming LGMD2A/Calpainopathy Twitter: @CureCalpain3 WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUS ON: LGMD2A, a form of Calpainopathy IF YOU FOCUS ON A SUB-TYPE, IS THERE A REGISTRY AND HOW CAN PATIENTS JOIN? Yes, we maintain the global LGMD2A Patient Registry. It’s easy to sign up at www.lgmd2a.org Is your organization a Non-Profit? If so, what type: Yes, we are a U.S.-based 501 (c)(3) tax-exempt public charity WHAT INSPIRED THE CREATION OF YOUR ORGANIZATION: Coalition to Cure [...]
