Latest posts tagged with #FSHD on Bluesky
#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
🧡 #20J | Día Mundial de la Distrofia Muscular Facioescapulohumeral #FSHD
📢 Desde los mupis digitales junto al Ayuntamiento, la asociación @fshd_spain nos acerca esta enfermedad minoritaria, genética, degenerativa y sin cura, con su campaña #SalvaNuestraSonrisa
#WorldFSHDDay
🧡🍊 Hoy 20 de junio, #DíaMundialFSHD: destacamos la investigación de la Plataforma de #DiagnósticoMolecular de #Biogipuzkoa. sobre la distrofia #facioescapulohumeral 🧬
📰 https://f.mtr.cool/jxluoahelp
#FSHD #OrangeSliceChallenge #cureFSHD #SalvaNuestraSonrisa #WorldFSHDDay @FSHDSociety
Cada 20 de junio se conmemora el Día Mundial de la Distrofia Muscular Facioescapulohumeral (FSHD).
#díamundialdistrofiamuscularfacioescapulohumeral #FSHD #distrofiamuscular
