Author: Jennifer Levy

LGMD diagnostic codes proposed for final implementation

BIG NEWS! New diagnostic codes for those living with LGMD that match their diagnosis are likely on their way! Coalition to Cure Calpain 3 has been working with Muscular Dystrophy Association and other LGMD foundations, patients, and expert physicians to

Do you have questions about LGMD2A/R1?

Coalition to Cure Calpain 3 has answers! Click here to read our recently updated Frequently Asked Questions (FAQs) for patients and families.

Sarepta Therapeutics Q1 Update on LGMD Programs

Sarepta Therapeutics recently published a Community Letter to share updates on their limb-girdle muscular dystrophy gene therapy programs. Click here to access the letter on Sarepta’s website.

Daniel Ferguson LGMD Foundation Launches

C3 is pleased to share the launch of an Australian-based organization, the Daniel Ferguson LGMD Foundation. This registered charity aims to improve the lives of those living with LGMD2A/R1 by improving awareness, increasing genetic testing, and enabling those living with

Join Coalition to Cure Calpain 3 in celebrating Rare Disease Day!

Rare Disease Day takes place on the last day of February every year, with the goal of raising awareness about rare diseases and their impact on patients’ lives. Over 300 million people are living with one or more of over

Have you participated in a clinical research study?

Attention Individuals with LGMD2A/R1: Coalition to Cure Calpain 3 wants to hear from you! If you have participated in clinical research, such as a natural history study, an observational study, or a clinical trial, please follow this link to answer

What’s on the Horizon for LGMD2A/R1?

Dr. Jennifer Levy, Coalition to Cure Calpain 3 Scientific Director, is a proud contributor to the Winter 2022 issue of LGMD News. This magazine, a project of The Speak Foundation, publishes up-to-date information for the LGMD community. Dr. Levy’s article

C3 to Participate in Externally-Led PFDD Meeting with FDA

If you are living with LGMD2A/R1, you will have the opportunity to participate in an externally-led Patient-Focused Drug Development Meeting (EL-PFDD) with the FDA on September 23, 2022. C3 is proud to be one of six LGMD organizations to collaborate

Carol Abraham appointed to Patient Engagement Collaborative

Today, the U.S. Food and Drug Administration (FDA), in collaboration with the Clinical Trials Transformation Initiative (CTTI), announced that Carol Abraham has been appointed to the Patient Engagement Collaborative (PEC) and will serve a two year term. Carol is the

A Special Message from Lionel Messi to the C3 Community

C3 is thrilled to share a special video message from soccer great Lionel Messi to promote September 30th as Limb-Girdle Muscular Dystrophy Awareness Day! CLICK HERE to donate to C3 to drive research for a cure, or text CALPAIN to