📄 New research in JND:
The phase 3 REACH trial evaluated losmapimod in FSHD
While the study did not meet its primary endpoint, losmapimod was well tolerated, with insights that may guide future trials. buff.ly/vVwusOF
#FSHD #ClinicalTrials #Neuromuscular #RareDisease
Eine kontrastreiche Schwarz-Weiß-Aufnahme zeigt die Hände des Users, die ein dickes, rustikales Notizbuch aus dunklem Leder halten. Zentrales Motiv: Das Notizbuch ist mit einem Lederband umwickelt, in dem ein dunkler Stift (Füllfederhalter oder Kugelschreiber) steckt. Die Seiten des Buches wirken leicht wellig und füllen den Ledereinband prall aus. Die Hände: Beide Hände umschließen das Buch von den Seiten. Die Hautstruktur und feine Härchen auf den Handrücken sind durch das Spiel von Licht und Schatten deutlich erkennbar. Am rechten Handgelenk trägt der User eine Armbanduhr mit einem hellen Zifferblatt und mehreren Chronographen-Anzeigen. Hintergrund & Kleidung: Der User trägt ein dunkles T-Shirt, auf dem ein Teil eines kreisförmigen Logos mit dem Wort „SLOW“ zu sehen ist. Im unteren Bereich ist eine helle Jeans erkennbar. Stil: Das Bild hat eine starke Körnung und eine intime, fokussierte Atmosphäre. Unten links befindet sich das weiße Wasserzeichen „@gruenkohlwiesel.bsky.social“.
#MännerhändeMittwoch
Ich lieb's Notizen mit der Hand zu machen 🥰 nur so kann ich alles sortieren, komme auf Lösungen... umso mehr fuckt (sorry) es mich ab, dass mir Schreiben seit ein paar Monaten zunehmend schwerer fällt, #FSHD ist ein mieses Arschloch, das mir schon zu viel genommen hat 😔
👉Hearing, Voice and Speech Disorders in 10-Year-Old-Boy with #FSHD - Case Study
💡Bilateral severe sensorineural hearing loss was documented. Speech disorders were associated with reduced tension of articulatory muscles.
📰pmc.ncbi.nlm.nih.gov/articles/PMC12978010/pdf...
#GrandesMinorías: La ingeniería detrás de una coleta. Para María Peláez peinarse no es un gesto cotidiano, es una maniobra logística. Vive con #FSHD, una distrofia muscular que detiene sus brazos a la altura del pecho. Cuenta su historia en #GrandesMinorías y habla sobre la invisibilidad de la
Happy Rare Disease Day to me and everyone else with such fun in their lives!
#FSHD #disability #ChronicIllness
In a recent @CheckRare feature, Satellos CMO Dr. Wildon Farwell discusses the science behind SAT-3247 and how restoring the #muscleregeneration process could offer a new therapeutic approach for people living with #Duchenne #FSHD $msclf $mscl Watch the interview checkrare.com/new-treatmen...
Honoured that our FSHD antisense gapmer technology was recognized with a 2025 Innovation Award from
@ualberta.bsky.social
Technology Transfer Services, following its license to Facio BioTherapies and Children’s National Research Institute.
Grateful to our team and partners. #FSHD #RareDisease
Dan Perez founded the #FSHD Society to foster research & help patients w this painful & debilitating muscular dystrophy. It was a privilege to have known this brave, caring, smart person who was instrumental in getting research money for FSHD, a strange epigenetics-related disease. Melanie Ehrlich
🫁 As the holiday season approaches, remember to stop & take a deep breath. Looking for community support, join one of our upcoming Feeling Fit sessions or Wellness Hours.
Full details on our Calendar: www.FSHDSociety.org/events
#NationalStressAwarenessDay #FSHD #StressManagement
Great to see Ania Kordala, from @CureMFM13, at WDAD 2025 by Stop Duchenne
Highlights included:
🧬 Prof. Joel Chamberlain on building a mouse model for FSHD
💡 Prof. Agnieszka Łoboda on H₂S donors improving muscle health in DMD mice
Cross-disease science = progress for all
#DMD #FSHD #RareDisease
Have you heard about the MDA's new Durable Medical Equipment (DME) Grant Program? Access essential equipment that supports greater independence, safety, & everyday mobility.
To apply, visit the MDA: https://ow.ly/5cNX50XjgiR
#FSHD #MDA #MuscularDystrophy #Neuromuscular #DME
Join Tim & guest Elissa for a deep conversation covering:
-How FSHD can affect post-partum healing
-Caring for your body and mind &
-Learning to own your FSHD.
https://youtu.be/2oyG_5v61Bk
#FSHD #FSHDStraightTalk #Podcast #RareDisease #RareDiseasePodcast #FSHMuscularDystrophy
Novartis acquires Avidity Biosciences! Novartis now has two FSHD therapies in development. "We look forward to continued progress under Novartis’s stewardship."
Read the announcement: www.fshdsociety.org/2025/10/27/novartis-acqu...
#Avidity #Novartis #FSHDResearch #FSHD
Thank you everyone for another successful Walk & Roll weekend in Texas! Over 30 participants enjoyed the sunset & raised $13,000+ to support our work to #CureFSHD.
Read more updates & see additional photos on our blog: www.fshdsociety.org/2025/09/11/2025-walkroll...
#FSHD #WalkRoll
Today at the FSHD Annual Engagement Day experts from NuTH are giving useful talks on pain management, sleep issues and exercise prescription👩⚕️
We're also getting research updates from the lab team on FSHD mechanisms, lab studies and imaging projects👨🔬
#FSHD
Excited to share our new preprint: Local Non-Coding Regulatory Elements in the Muscular Dystrophies 🚀
We review how #lncRNAs, #miRNAs, and epigenetic regulators shape disease mechanisms in #DMD, #FSHD, #LGMD & more. www.preprints.org/manuscript/2... #preprints via @Preprints_org
FSHD Annual Engagement Day – 25 Sept, Newcastle
🔬 Research updates
🩺 Clinical sessions
👩⚕️ 1:1 consultations
💬 Last year: “high quality, interactive & informative”
Book now: rb.gy/gabmw7
#FSHD
🇧🇪 🇨🇱 🇬🇧
👉DUX4 at 25: how it emerged from "junk DNA" to become the cause of #FSHD
💡The history of DUX4, fromgenetic linkage studies in the early 1990s, through to identificationof the DUX4 gene in 1999
📰https://pubmed.ncbi.nlm.nih.gov/40855454/
Alexandra Belayew , Alberto L Rosa & Peter S Zammit
DUX4 at 25: how it emerged from “junk DNA” to become the cause of facioscapulohumeral muscular dystrophy
skeletalmusclejournal.biomedcentral.com/articles/10....
#FSHD, #DUX4, #Myoblue #SkeletalMuscle
Most drug discovery efforts for #FSHD target #DUX4 RNA or protein. We reviewed its upstream regulation. Epigenetic regulation of DUX4: From embryogenesis to muscular degeneration. sciencedirect.com/science/arti...
The Promising Growth of the Facioscapulohumeral Muscular Dystrophy Market from 2025 to 2034 #United_States #Las_Vegas #DelveInsight #FSHD #Facioscapulohumeral
🇯🇵
👉Iron supplementation alleviates pathologies in a mouse model of #FSHD
💡DUX4-provoked toxicity is involved in the activation of the ferroptosis-related pathway
📰https://jci.org/articles/view/181881
(pdf) jci.org/articles/vie...
🧬
@Vita Therapeutics and I Peace announced a development program to generate iPS-derived differentiated cells for transplant therapy with an initial focus on #FSHD using universal #iPS cells
www.prnewswire.com/news-release...
Vita Therapeutics and I Peace Forge Path for iPS-derived Cells in FSHD Treatment #United_States #Palo_Alto #iPS_Cells #FSHD #Vita_Therapeutics
New #hmg_journal paper: A discrete region of the D4Z4 is sufficient to initiate epigenetic silencing. #FSHD #Myoblue tinyurl.com/yfs5nnbn
New #jclinicalinvest paper: Iron supplementation alleviates pathologies in a mouse model of facioscapulohumeral muscular dystrophy. #FSHD #Myoblue tinyurl.com/4646ysev
Join us for the FSHD Engagement Day in Newcastle on 25 Sept 2025! Connect with others, hear from experts & explore key aspects of life with FSHD.
Book your place: rb.gy/gabmw7
#FSHD #FSHDUK #FSHDEurope #WorldFSHDDay
Facioscapulohumeral Muscular Dystrophy (FSHD) is characterized by progressive muscle weakness and wasting, mainly in the face, shoulders, and upper arms
6/20 is World #FSHD Day: @fshdsociety.bsky.social www.fshdsociety.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
Now for our big news... I'm delighted to announce that the UK FSHD Patient Registry has now 🌟 RELAUNCHED 🌟 onto our new bespoke registry platform, with improved questionnaires and features!
Visit our website to learn more and sign up today!
👀 www.fshd-registry.org.uk 👀
#FSHD #WorldFSHDday
🍊 Today is World FSHD Day!
📅 Held on June 20th to raise public awareness of #FSHD
🧬 Our Patient Registry helps advance research and development of treatments, therapies, and care for all those diagnosed with FSHD in the UK.
💻 Visit our newly revamped website to learn more: fshd-registry.org.uk
