FSHD Clinical Trial Research Network

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...

09/25/2025

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

10/29/2024

Great news! The University of Hong Kong has joined the FSHD CTRN!

10/24/2024

Here's a post on Bill Moss and his daughter, Natalie Cooney on their work at FSHD Global.

The father-daughter duo spearheading a new future for muscular dystrophy diseases through the FSHD Global Research Foundation - FSHD Global

10/11/2024

https://finance.yahoo.com/news/fshd-society-introduces-betterlife-fshd-100000258.html?guccounter=1&guce_referrer=aHR0cHM6Ly93d3cuYmluZy5jb20v&guce_referrer_sig=AQAAAA8xWakt9CCiYz8j-nR6F57mowenbjEjJaDNVaMu9TcE52R3U-MbFE4IQjFs8EL8gH5KlhlSArRgz93JJ5GLmWNK5Rs9QNvwz8FxfjFwQuTWXEF0ji-CAOXMrnSGadcsEE1E6hx0goMTtDHwQyXhOuVsE4hxUn-yJVsSjc_x5UwP

The FSHD Society has released BetterLife FSHD, a groundbreaking web-based research hub and study designed to advance the understanding of Facioscapulohumeral Muscular Dystrophy (FSHD) and improve patient outcomes. Developed in partnership with Lumiio and officially launched on August 29, 2024, Bette...

09/17/2024

Unfortunate news from Fulcrum

https://ir.fulcrumtx.com/news-releases/news-release-details/fulcrum-therapeutics-announces-topline-results-phase-3-reach/