News

New Virtual Fitness Program Offers Free Live Classes for All Levels

The Hereditary Neuropathy Foundation (HNF) has launched a new virtual fitness platform to promote the practice of safe physical activity among patients with Charcot-Marie-Tooth (CMT) disease. The “Movement is Medicine” Fitness Ambassador program will enable members of HNF’s Movement is Medicine initiative to have access to weekly live…

Research Ongoing Into Newly Identified Subtype Tied to SORD Gene

Researchers are investigating whether treatments for other disorders might benefit people with a newly identified type of Charcot-Marie-Tooth disease (CMT) that may be a common recessive form of hereditary neuropathy. They are inviting people diagnosed with CMT but with no clear disease-causing mutation to help by joining a registry…

NORD’s Caregiver Respite Program Continues Through Pandemic

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…

NfL Shows Potential as CMT Biomarker, But More Work Needed

Blood plasma levels of the protein neurofilament light chain (NfL) are elevated in Charcot-Marie-Tooth disease (CMT) patients and correlate somewhat with disease severity, a recent study reports. These findings suggest that the protein may serve as a clinical biomarker for identifying CMT and tracking disease progression,…