FSHD Clinical Trial Research Network

03/09/2026

02/26/2026

https://musculardystrophynews.com/columns/dreaming-solutions-olympic-sized-challenges-fshd/

After following the Olympics, columnist Robin Stemple envisions a future with new treatments and even a cure for FSHD.

11/10/2025

https://medicaldialogues.in/neurology-neurosurgery/news/study-shows-hormone-combination-improved-strength-and-function-in-fshd-patients-157802

New research has demonstrated that a combined regimen of growth hormone and testosterone is safe, well-tolerated, and is associated with meaningful improvements in muscle mass, strength, and...

08/28/2025

https://musculardystrophynews.com/columns/going-it-alone-harder-as-fshd-progresses/

02/07/2025

https://www.everythinglubbock.com/news/local-news/west-texas-native-overcomes-muscular-dystrophy-to-pursue-paralympic-dreams/

Johnny Quintana’s life changed at the age of 19 when he was diagnosed with a rare form of muscular dystrophy called Facioscapulohumeral muscular dystrophy (FSHD).

01/17/2025

Have you checked out the FSHD Society's Better Life FSHD? They have developed an online portal to help you manage and understand your FSHD.

Check it out here:

https://www.fshdsociety.org/betterlife-fshd/

01/08/2025

The FSHD CTRN has Expanded! For more information on studies you may qualify, visit our website:

https://www.kumc.edu/fshd-clinical-trial-research-network.html

11/01/2024

Hello Everyone! Avidity is trying for an accelerated approval path with their Biomarker Cohort in the Fortitude Trial!

Biomarker cohort for delpacibart braxlosiran (del-brax), the first potential therapy to target DUX4, is measuring changes in DUX4 regulated biomarkers; del-brax 2 mg/kg will be administered every six weeks