Shout out to Charley who approached us with the idea to create the LGMD2A/R1 Patient Story posts: “Sharing different patient stories can highlight how this condition affects people at all ages and stages of progression. I think this kind of content
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
New research alert! Measuring motor function in LGMD2A/R1
A new paper, “Motor Function in LGMD2A/R1: Validation of Clinical Outcome Assessments for Clinical Care and Trial Readiness,” was recently published in the journal Neurology: Genetics. This important, C3-funded initiative is a testament to international cooperation, bringing together leading LGMD
New Publication Characterizes Mouse Model of Calpainopathy
A group of researchers from the Heimer Institute for Muscle Research in Bochum, Germany have characterized a Capn3-deficient mouse strain. This is one of four strains recently generated by Jackson Laboratories as part of a Coalition to Cure Calpain 3
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
C3 Attends the 2025 International LGMD Conference
C3 was proud to be a part of the International LGMD Conference which convened July 18-20 in Orlando, Florida. This event is hosted by the Speak Foundation and focuses on all subtypes of LGMD. Among the highlights: A recording of
LGMD2A/R1 Standards of Care Workshop
Coalition to Cure Calpain 3 (C3) is proud to have partnered with the John Walton Muscular Dystrophy Research Centre, Sarepta Therapeutics, the Speak Foundation, and LGMD Awareness Foundation to sponsor the LGMD2A/R1 Standards of Care (SOC) Workshop. This meeting, organized
Community Health Clinic publishes newsletter focused on LGMDs
LGMD2A/R1 is considered a rare disease because it affects only about 1 in 100,000 people. However, certain areas of the world have a higher prevalence. Indiana’s Adams and Jay Counties have the highest concentration of individuals living with LGMD2A/R1: more
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.