The Speak Foundation, in partnership with the LGMD Awareness Foundation and the CureLGMD2i Foundation, has announced the launch of five LGMD Centers of Excellence, a US-based network of academic medical centers designed to coordinate multidisciplinary care and to improve clinical
Dr. Melissa Spencer provides update on development of an LGMD2A/R1 gene therapy
Melissa Spencer, PhD, Chair of the C3 Scientific Advisory Board and Professor of Neurology at UCLA, recently presented during a webinar hosted by the Muscular Dystrophy Association (MDA). The presentation, aimed at educating the public, gave an excellent background about
New research grant aims to improve genetic diagnostics in individuals with CAPN3 mutations
C3 is excited to share that a research grant has been awarded to Dr. Svetlana Gorokhova and Dr. Marc Bartoli, Translational Neuromyology Team, Marseille Medical Genetics Institute at Aix Marseille University. The project, “Optimizing the functional assay to identify novel
New Research Grant: Investigating calcium handling modulation as a potential therapeutic for LGMD2A/R1
Coalition to Cure Calpain 3 (C3) is driving LGMD2A/R1 research by awarding a new grant to Dr. Elisabeth Barton, Dr. Lan Wei-LaPierre, and Dr. Siobhan Malany of the University of Florida. The project is titled “Store-operated calcium entry modulation as
Giving Tuesday 2025: Meet Rexton
Over the next few days, we’ll be sharing “LGMD2A/R1 Stories” so you can learn more about the C3 Community as we raise money together to drive scientific research toward a cure for this muscle-wasting disease. Today, meet Rexton: Hi, I’m
Giving Tuesday 2025: Meet Walker
Over the next few weeks, we’ll be sharing “LGMD2A/R1 Stories” so you can learn more about the C3 Community as we raise money together to drive scientific research toward a cure for this muscle-wasting disease. Today, meet Walker: Hi, I’m
Giving Tuesday 2025: Meet Matt
Over the next few weeks, we’ll be sharing “LGMD2A/R1 Stories” so you can learn more about the C3 Community as we raise money together to drive scientific research toward a cure for this muscle-wasting disease. First up is Matt, who
Double the impact of your Giving Tuesday donation!
A C3 Champion has pledged to match every dollar raised – up to $15,000 – between now and December 9. This generous Giving Tuesday donation is made in honor of Matt Straface. Greetings! My name is Matt and it has
What’s new in LGMD2A/R1 research? Posters highlight new research at the International LGMD Conference
The 2025 International LGMD Conference, hosted by the Speak Foundation, was attended by over 500 LGMD patients and family members, clinicians, and scientists. For the first time, the conference included a scientific poster session for researchers to present their basic, translational, or
New Research Alert: GRASP-001 Study
New data from the GRASP-001 study identify clinical outcome assessments for future LGMD2A/R1 clinical trials A team of LGMD researchers, called the GRASP-LGMD Consortium, published the baseline results of their LGMD2A/R1 clinical outcome study in the Annals of Clinical and Translational Neurology.