Blog - FSHD Society

Living Beside FSHD: World FSHD Day Stories

Publié le juin 12th, 20266/12/26

By Kathy Chase People think they understand FSHD when they hear the words “muscular dystrophy.” I thought I did too. I imagined weakness. Difficulty walking. Maybe a wheelchair someday. What […]

Classé sous : Vivre avec la FSHD

Novartis Announces Positive Biomarker Results for Del-brax in FSHD

Publié le juin 11th, 20266/11/26

The FSHD community received encouraging news today as Novartis announced that delpacibart braxlosiran (del-brax) met the primary and key secondary endpoints in the biomarker cohort of the Phase 1/2 FORTITUDE […]

Classé sous : Recherche sur la FSHD, Nouvelles de la société FSHD

World FSHD Day – June 20, 2026

Publié le mai 27th, 20265/27/26

World FSHD Day, a global movement to raise awareness of FSHD, occurs on June 20. From orange slice selfies and proclamations to lit up buildings, World FSHD Day brings together […]

Classé sous : Histoire de la FSHD, Nouvelles de la société FSHD, Collecte de fonds et événements

A Glimpse into Mental Health in FSHD: Early Insights from BetterLife

Publié le mai 22nd, 20265/22/26

by Kayleigh Worek, BetterLife FSHD Manager What BetterLife FSHD data is telling us this Mental Health Awareness Month Living with FSHD can impact more than just muscles. When asking people […]

Classé sous : Recherche sur la FSHD, Vivre avec la FSHD, Santé mentale

Tags : Anxiety, Depression, Soutien social

What a New Study on FSHD and Mortality Means for Our Community

Publié le mai 18th, 20265/18/26

by Amanda Hill, Research & Care Programs Officer at the FSHD Society, and Ally Roets, Parent, Caregiver, CureFSHD for All Advocate and Parents’ Roundtable Leader Many of us in […]

Classé sous : Recherche sur la FSHD, Santé et médecine, Vivre avec la FSHD

Tags : Recherche fondamentale, Breathing Problems, Early Onset or Infatile, Tests génétiques, Heart Health, Lung Health, Motivation de la recherche