Coalition to Cure Calpain 3 recognizes that there is strength in numbers. While our scientific research has a pinpoint focus on calpainopathy, our advocacy initiatives embrace the entire LGMD community. By collaborating with our advocacy partners, we collectively ensure that the patient voice is amplified to champion programs and policies that bring us closer to clinical trial readiness and move us forward toward treatments, and ultimately a cure, for everyone living with LGMD2A/R1 and LGMDD4.
Recent Advocacy Initiatives
LGMD Policy Action Day on Capitol Hill
LGMD Policy Action Day uniquely brings forward both scientific expertise and lived experience, a combination that deeply resonates with policymakers. As an advocate, Melina had the opportunity to help elevate the voices of our community while reinforcing a critical message: ultra-rare drug development must evolve if we are to deliver meaningful treatments to those who urgently need them.
Meet Melina Garza, Our New Advocacy Chair
C3 is thrilled to share that Melina Garza is stepping into a newly-created volunteer position. As Advocacy Chair, Ms. Garza will represent our organization educating stakeholders about calpainopathy and engaging them in C3’s mission to drive research toward a treatment or cure.
LGMD2A/R1 Standards of Care Workshop
Collaboration was at the core of the LGMD2A/R1 Standards of Care (SOC) Workshop where C3 partnered with the John Walton Muscular Dystrophy Research Centre, Sarepta Therapeutics, the Speak Foundation, and LGMD Awareness Foundation to impact LGMD clinical practice globally.