Author: Jennifer Levy

SAVE THE DATE: National LGMD Conference to be held August 30 – September 2, 2019

The National Limb Girdle Muscular Dystrophy Conference will be held in Chicago, Illinois on August 30 – September 2, 2019 at the Hyatt Regency. The conference is dedicated to bringing every patient into an active role seeking to find cures

LGMD2A Patients Sought for Natural History Study at Nationwide Children’s Hospital

A natural history study of limb girdle muscular dystrophy type 2A (LGMD2A, a form of calpainopathy) has been initiated by Linda Lowes, PT, PhD at Nationwide Children’s Hospital in Columbus, Ohio. The aim of this study is to observe

Myonexus Therapeutics announces initiation of a gene therapy clinical trial for LGMD2E

On November 8, 2018, Myonexus Therapeutics announced the initiation of a clinical trial evaluating MYO-101, a novel gene therapy candidate for beta-sarcoglycanopathy, also known as limb girdle muscular dystrophy type 2E (LGMD2E). The trial is underway at Nationwide Children’s Hospital’s

C3 Scientific Conference 2018

On September 12 – 13, 2018, Coalition to Cure Calpain 3 hosted the “C3 Scientific Conference” in Arlington, Virginia. In attendance were prominent neuromuscular clinicians, world renowned research scientists from academia and industry, and representatives from various funding agencies. This

C3 Presents at World Muscle Society Congress

Coalition to Cure Calpain 3 (C3) attended the 23rd International Annual Congress of the World Muscle Society, October 2-6 2018 in Mendoza, Argentina. Dr. Jennifer Levy, C3 Scientific Director, represented C3 and presented a poster detailing our mission, registry, and

Coalition to Cure Calpain 3 Provides Gene Therapy Initiative Updates

Two new research projects funded to explore potential treatments for calpainopathy/LGMD2A $500,000+ committed to gene therapy research since initiative launched in 2017 Coalition to Cure Calpain 3 (C3), a non-profit patient advocacy organization focused on identifying and advancing potential treatments

Together we are STRONGER: 4th Annual LGMD Awareness Day is Coming Up!

The 4th annual Limb Girdle Muscular Dystrophy Awareness Day is coming up on September 30, 2018. Help C3 raise awareness of LGMD in your community and through social media. It’s time to: 1. Start planning to wear Lime Green on

Limb Girdle Muscular Dystrophy Consortium Forms to Prepare for Clinical Trials

Big news for Limb Girdle Muscular Dystrophies (LGMDs)! The Muscular Dystrophy Association (MDA) recently awarded a clinical research network grant to Dr. Nicholas Johnson, vice chair of research and associate professor of neurology at Virginia Commonwealth University, to establish an

C3 Awards Gene Therapy Initiative Grant to Dr. Zarife Sahenk

FOURTH GENE THERAPY INITIATIVE GRANT SUPPORTS PROMISING RESEARCH AT NATIONWIDE CHILDREN’S HOSPITAL Coalition to Cure Calpain 3 (C3) is excited to announce that a new research grant has been awarded to Dr. Zarife Sahenk, Professor of Pediatrics and Neurology at

C3 Statement Regarding Partnership Between Myonexus and Sarepta Therapeutics

Sarepta Therapeutics recently announced a partnership with Myonexus Therapeutics focused on developing gene therapies for five subtypes of LGMD: 2B, 2C, 2D, and 2L. The agreement states that Sarepta will make an upfront payment of $60 million. If development-related milestones