Weekly Spotlight - 07.11.24

Community

We want to hear your story!

Fill in the form to share your experiences and any challenges you’ve faced living with your condition, for a chance to be featured in one of our weekly newsletters!

In the News

Discover the Benefits of Personal Trainers for FSHD Fitness Journeys

The Feeling Fit Zoom community offers bi-monthly sessions for individuals with FSHD, discussing personal trainers versus physical therapists. Chris Haven shares her positive experience with trainer Alex Walker, highlighting regained strength. Sessions occur on the 2nd and 4th Thursdays, focusing on safe, tailored exercises. Participants are encouraged to consult healthcare providers.

Avidity Biosciences Expands FORTITUDE Trial with New Cohort C Enrollment

Avidity Biosciences has started enrolling Cohort C in the FORTITUDE trial, focusing on a new therapy for facioscapulohumeral muscular dystrophy (FSHD). This phase will assess safety and efficacy, with participants aged 16-70. The trial aims to bring hope and potential treatment to the FSHD community.

Del-brax Trial Offers Hope for FSHD Patients

A new Phase 1/2 trial of del-brax is enrolling patients with FSHD, aiming to gather biomarker data for potential FDA accelerated approval. Del-brax targets the DUX4 protein, believed to cause FSHD symptoms. The trial, spanning the US, UK, and Canada, seeks to offer hope for those without treatment options.

Understanding p38's Role in DUX4 Regulation for Muscular Dystrophy

The study explores the role of p38 MAPK in regulating DUX4 expression in facioscapulohumeral muscular dystrophy (FSHD). It finds that p38 is crucial for early DUX4 expression but not in later stages. This insight is vital for developing treatments, as current therapies like losmapimod show limited late-stage effectiveness.