February 2, 2025 at 8:36 AM
👀 💰 Are you searching for #funding for your #FSHD #research?
🧬🌐 This FSHD Society webpage has information on funding opportunities and grant calls currently available from funders all over the globe... www.fshdsociety.org/grants/
🧬🌐 This FSHD Society webpage has information on funding opportunities and grant calls currently available from funders all over the globe... www.fshdsociety.org/grants/
Grants | FSHD Society
The FSHD Society offers investigator-initiated research grants to support basic, translational and clinical-based research in FSHD.
www.fshdsociety.org
February 5, 2025 at 1:04 PM
👀 💰 Are you searching for #funding for your #FSHD #research?
🧬🌐 This FSHD Society webpage has information on funding opportunities and grant calls currently available from funders all over the globe... www.fshdsociety.org/grants/
🧬🌐 This FSHD Society webpage has information on funding opportunities and grant calls currently available from funders all over the globe... www.fshdsociety.org/grants/
🧡🍊 FSHD: Arretaz ikertzen den gaixotasun genetiko bat
Gaur, #FSHD|renMunduEgunean, #Biogipuzkoaren #DiagnostikoMolekularra|ren Plataformaren lana azpimarratu nahi dugu, distrofia #fazioeskapulohumerala ikertzen duena.
📰 https://f.mtr.cool/svthfvmsnv
#cureFSHD #WorldFSHDDay
Gaur, #FSHD|renMunduEgunean, #Biogipuzkoaren #DiagnostikoMolekularra|ren Plataformaren lana azpimarratu nahi dugu, distrofia #fazioeskapulohumerala ikertzen duena.
📰 https://f.mtr.cool/svthfvmsnv
#cureFSHD #WorldFSHDDay
June 20, 2025 at 8:24 AM
🧡🍊 FSHD: Arretaz ikertzen den gaixotasun genetiko bat
Gaur, #FSHD|renMunduEgunean, #Biogipuzkoaren #DiagnostikoMolekularra|ren Plataformaren lana azpimarratu nahi dugu, distrofia #fazioeskapulohumerala ikertzen duena.
📰 https://f.mtr.cool/svthfvmsnv
#cureFSHD #WorldFSHDDay
Gaur, #FSHD|renMunduEgunean, #Biogipuzkoaren #DiagnostikoMolekularra|ren Plataformaren lana azpimarratu nahi dugu, distrofia #fazioeskapulohumerala ikertzen duena.
📰 https://f.mtr.cool/svthfvmsnv
#cureFSHD #WorldFSHDDay
Currently, there's no cure or even a medication to manage FSHD. I was hoping that one of the 2 meds in stage 3 trials would be approved this yr.
That's not going to happen now...🤨🫤 By the time TFG's term is over, it may be too late for me...🤷🏼
That's not going to happen now...🤨🫤 By the time TFG's term is over, it may be too late for me...🤷🏼
All NIH study sections canceled indefinitely. This will halt science and devastate research budgets in universities.
January 23, 2025 at 5:44 PM
Currently, there's no cure or even a medication to manage FSHD. I was hoping that one of the 2 meds in stage 3 trials would be approved this yr.
That's not going to happen now...🤨🫤 By the time TFG's term is over, it may be too late for me...🤷🏼
That's not going to happen now...🤨🫤 By the time TFG's term is over, it may be too late for me...🤷🏼
Thanks so much to all those following me. If I haven't responded it's because FSHD1 is working against my efforts to do so in a timely fashion. My body and energy level maybe be failing but my mind and heart remains willing. To learn more about FSHD1 follow the link below.
youtu.be/3bPOypDmPoc?...
youtu.be/3bPOypDmPoc?...
FSHD Muscular Dystrophy 101
YouTube video by FSHD Society
youtu.be
March 31, 2025 at 6:30 PM
Thanks so much to all those following me. If I haven't responded it's because FSHD1 is working against my efforts to do so in a timely fashion. My body and energy level maybe be failing but my mind and heart remains willing. To learn more about FSHD1 follow the link below.
youtu.be/3bPOypDmPoc?...
youtu.be/3bPOypDmPoc?...
Happy Rare Disease Day to me and everyone else with such fun in their lives!
#FSHD #disability #ChronicIllness
#FSHD #disability #ChronicIllness
February 28, 2026 at 4:21 AM
Happy Rare Disease Day to me and everyone else with such fun in their lives!
#FSHD #disability #ChronicIllness
#FSHD #disability #ChronicIllness
Wonderful #raredisease breakfast with the #NeuromuscularWA community @perkinsinstitute.bsky.social
#myopathy #IBM #FSHD #CMT #myotonicdystrophy
Stronger together
#myopathy #IBM #FSHD #CMT #myotonicdystrophy
Stronger together
February 28, 2025 at 7:38 AM
Wonderful #raredisease breakfast with the #NeuromuscularWA community @perkinsinstitute.bsky.social
#myopathy #IBM #FSHD #CMT #myotonicdystrophy
Stronger together
#myopathy #IBM #FSHD #CMT #myotonicdystrophy
Stronger together
Bonjour tout le monde 😊.
Dicton du 20 juin 2026 :
"Pluie d'orage à la Saint-Silvère, c'est beaucoup de vin dans le verre."
Journée mondiale des réfugiés.
Journée mondiale de la myopathie FSHD.
Journée internationale du surf 🏄!
Beau week-end à vous 🥰 !
Dicton du 20 juin 2026 :
"Pluie d'orage à la Saint-Silvère, c'est beaucoup de vin dans le verre."
Journée mondiale des réfugiés.
Journée mondiale de la myopathie FSHD.
Journée internationale du surf 🏄!
Beau week-end à vous 🥰 !
June 20, 2026 at 7:17 AM
Bonjour tout le monde 😊.
Dicton du 20 juin 2026 :
"Pluie d'orage à la Saint-Silvère, c'est beaucoup de vin dans le verre."
Journée mondiale des réfugiés.
Journée mondiale de la myopathie FSHD.
Journée internationale du surf 🏄!
Beau week-end à vous 🥰 !
Dicton du 20 juin 2026 :
"Pluie d'orage à la Saint-Silvère, c'est beaucoup de vin dans le verre."
Journée mondiale des réfugiés.
Journée mondiale de la myopathie FSHD.
Journée internationale du surf 🏄!
Beau week-end à vous 🥰 !
Today is Rare Disease Day.
There are >6000 rare diseases that affect >300 million people, including Duchenne (DMD), Myotonic (DM) & Facioscapulohumeral (FSHD) muscular dystrophies & Motor Neuron Disease (MND), that are studied at the CMR.
#RareDiseaseDay #Duchenne #FSHD #muscle #myoblue
There are >6000 rare diseases that affect >300 million people, including Duchenne (DMD), Myotonic (DM) & Facioscapulohumeral (FSHD) muscular dystrophies & Motor Neuron Disease (MND), that are studied at the CMR.
#RareDiseaseDay #Duchenne #FSHD #muscle #myoblue
February 28, 2025 at 12:13 AM
Today is Rare Disease Day.
There are >6000 rare diseases that affect >300 million people, including Duchenne (DMD), Myotonic (DM) & Facioscapulohumeral (FSHD) muscular dystrophies & Motor Neuron Disease (MND), that are studied at the CMR.
#RareDiseaseDay #Duchenne #FSHD #muscle #myoblue
There are >6000 rare diseases that affect >300 million people, including Duchenne (DMD), Myotonic (DM) & Facioscapulohumeral (FSHD) muscular dystrophies & Motor Neuron Disease (MND), that are studied at the CMR.
#RareDiseaseDay #Duchenne #FSHD #muscle #myoblue
I waited until I absolutely KNEW I had FSHD before I went & got tested.
🤷🏼
Same reason
🤷🏼
Same reason
December 12, 2025 at 11:42 PM
I waited until I absolutely KNEW I had FSHD before I went & got tested.
🤷🏼
Same reason
🤷🏼
Same reason
New #SkeletalMuscle paper: SIX transcription factors are necessary for the activation of DUX4 expression in facioscapulohumeral muscular dystrophy. #FSHD tinyurl.com/ysyw9vjr
SIX transcription factors are necessary for the activation of DUX4 expression in facioscapulohumeral muscular dystrophy - Skeletal Muscle
Background Facioscapulohumeral muscular dystrophy (FSHD) is a common and progressive muscle wasting disease that is characterized by muscle weakness often first noticed in the face, the shoulder girdl...
tinyurl.com
December 3, 2024 at 1:09 PM
New #SkeletalMuscle paper: SIX transcription factors are necessary for the activation of DUX4 expression in facioscapulohumeral muscular dystrophy. #FSHD tinyurl.com/ysyw9vjr
The UK #FSHD Registry Team are attending the Northeast and Cumbria FSHD Engagement Day today, sharing about the latest clinical and research initiatives from JWMDRC. Come and have a chat with us during the breaks about how the registry can support the FSHD patient and research communities! 🧬🔬🍊
November 29, 2024 at 11:18 AM
The UK #FSHD Registry Team are attending the Northeast and Cumbria FSHD Engagement Day today, sharing about the latest clinical and research initiatives from JWMDRC. Come and have a chat with us during the breaks about how the registry can support the FSHD patient and research communities! 🧬🔬🍊
Quest for today is covid & flu shot. 🫤 I hate, hate, hate getting vaccines. The covid vaccine always takes me down for a few days. ☹️ I'm not skipping it though cuz, for me, w/ FSHD? The alternative is likely death. Flu same, same.
Might be offline more this weekend, idk...
Might be offline more this weekend, idk...
November 7, 2025 at 2:21 PM
Quest for today is covid & flu shot. 🫤 I hate, hate, hate getting vaccines. The covid vaccine always takes me down for a few days. ☹️ I'm not skipping it though cuz, for me, w/ FSHD? The alternative is likely death. Flu same, same.
Might be offline more this weekend, idk...
Might be offline more this weekend, idk...
New #JCI_insight paper: Matrix metalloproteinases are hallmark early biomarkers and therapeutic targets in FSHD. #Myoblue tinyurl.com/3w9khp4n
JCI Insight -
Matrix metalloproteinases are hallmark early biomarkers and therapeutic targets in FSHD
tinyurl.com
September 23, 2025 at 7:30 PM
New #JCI_insight paper: Matrix metalloproteinases are hallmark early biomarkers and therapeutic targets in FSHD. #Myoblue tinyurl.com/3w9khp4n
Holy shit y'all!! Just found out there's a stage 3 study for a trial for an FSHD medication not 5 blocks from me. Hoping they're still enrolling patients. Gona call tomorrow. Praying it IS, also that the drug works & gets accelerated approval. Cuz, if I don't get in? Might still be available 2026
July 9, 2025 at 10:48 PM
Holy shit y'all!! Just found out there's a stage 3 study for a trial for an FSHD medication not 5 blocks from me. Hoping they're still enrolling patients. Gona call tomorrow. Praying it IS, also that the drug works & gets accelerated approval. Cuz, if I don't get in? Might still be available 2026
We were fortunate to attend the @fshdsociety.bsky.social International Research Congress and FSHD Europe Patient Connect meetings last week.
These fantastic events brought together the FSHD community across Europe to make new connections and share research advancements #WorldFSHDday
These fantastic events brought together the FSHD community across Europe to make new connections and share research advancements #WorldFSHDday
June 20, 2025 at 12:58 PM
We were fortunate to attend the @fshdsociety.bsky.social International Research Congress and FSHD Europe Patient Connect meetings last week.
These fantastic events brought together the FSHD community across Europe to make new connections and share research advancements #WorldFSHDday
These fantastic events brought together the FSHD community across Europe to make new connections and share research advancements #WorldFSHDday
Ein Hifi-Lautsprecher kaputt, Mitteltieftöner schnarrt 😒
Garantie... muss einsenden: kann weder selbst verpacken noch ihn selbst zur Post geschweige zur Haustür bringen, muss um Hilfe fragen.
Das zieht so runter und frustriert, va wenn man es vor ein paar Jahren selbst konnte 😔
#Behindert
#FSHD
Garantie... muss einsenden: kann weder selbst verpacken noch ihn selbst zur Post geschweige zur Haustür bringen, muss um Hilfe fragen.
Das zieht so runter und frustriert, va wenn man es vor ein paar Jahren selbst konnte 😔
#Behindert
#FSHD
April 24, 2026 at 12:13 PM
Ein Hifi-Lautsprecher kaputt, Mitteltieftöner schnarrt 😒
Garantie... muss einsenden: kann weder selbst verpacken noch ihn selbst zur Post geschweige zur Haustür bringen, muss um Hilfe fragen.
Das zieht so runter und frustriert, va wenn man es vor ein paar Jahren selbst konnte 😔
#Behindert
#FSHD
Garantie... muss einsenden: kann weder selbst verpacken noch ihn selbst zur Post geschweige zur Haustür bringen, muss um Hilfe fragen.
Das zieht so runter und frustriert, va wenn man es vor ein paar Jahren selbst konnte 😔
#Behindert
#FSHD
Eden showed how SMCHD1 regulates the splicing of DNMT3B1, and how the promoted isoform changes DNA methylation at the D4Z4 satellite repeat to induce DUX4 expression, explaining how SMCHD1 mutations lead to FSHD. More details at: dx.doi.org/10.1126/scia...
#Epigenetics #Splicing #SMCHD1
#Epigenetics #Splicing #SMCHD1
DNMT3B splicing dysregulation mediated by SMCHD1 loss contributes to DUX4 overexpression and FSHD pathogenesis
SMCHD1 loss drives FSHD pathogenesis by disrupting DNMT3B splicing, leading to D4Z4 hypomethylation and DUX4 overexpression.
dx.doi.org
November 17, 2024 at 3:45 PM
Eden showed how SMCHD1 regulates the splicing of DNMT3B1, and how the promoted isoform changes DNA methylation at the D4Z4 satellite repeat to induce DUX4 expression, explaining how SMCHD1 mutations lead to FSHD. More details at: dx.doi.org/10.1126/scia...
#Epigenetics #Splicing #SMCHD1
#Epigenetics #Splicing #SMCHD1
Una nueva colaboración tiene por objetivo mejorar el diseño de los ensayos clínicos que evalúan posibles tratamientos para la distrofia muscular facioescapulohumeral (FSHD).🔬🤝
🔗Lee el artículo completo en el siguiente link: https://theakarifoundation.org/blog
#FSHD
🔗Lee el artículo completo en el siguiente link: https://theakarifoundation.org/blog
#FSHD
September 27, 2026 at 4:35 PM
Una nueva colaboración tiene por objetivo mejorar el diseño de los ensayos clínicos que evalúan posibles tratamientos para la distrofia muscular facioescapulohumeral (FSHD).🔬🤝
🔗Lee el artículo completo en el siguiente link: https://theakarifoundation.org/blog
#FSHD
🔗Lee el artículo completo en el siguiente link: https://theakarifoundation.org/blog
#FSHD
Right?! I was just thinking, I've been in severe pain from fshd muscular dystrophy most my life. My doctor was recently forced to reduce the pain meds of All her patients not once but 2 X in the last 3 years! I'm in pain constantly..
I've killed no one. (Promise)
I've killed no one. (Promise)
December 10, 2024 at 5:41 AM
Right?! I was just thinking, I've been in severe pain from fshd muscular dystrophy most my life. My doctor was recently forced to reduce the pain meds of All her patients not once but 2 X in the last 3 years! I'm in pain constantly..
I've killed no one. (Promise)
I've killed no one. (Promise)
Do religious kooks count? I grew up praying for a cure and feeling like i wasn't doing it right,rejected by god. Been told it's the sin of the father visited upon us kids because FSHD is hereditary. Doesn't feel good to be told you're godding wrong, either.
February 15, 2025 at 9:14 AM
Do religious kooks count? I grew up praying for a cure and feeling like i wasn't doing it right,rejected by god. Been told it's the sin of the father visited upon us kids because FSHD is hereditary. Doesn't feel good to be told you're godding wrong, either.
Every bit of this thread!!
I USED to do gun shows, bought some of my Best knives there. I'm NOT into guns, (too loud, also, have fshd a gun would only be taken from me) but, I Love knives & collect them.🤷🏼
A Few of my favorite pocket knives..Just a few..🤣😂
I USED to do gun shows, bought some of my Best knives there. I'm NOT into guns, (too loud, also, have fshd a gun would only be taken from me) but, I Love knives & collect them.🤷🏼
A Few of my favorite pocket knives..Just a few..🤣😂
September 5, 2025 at 2:08 PM
Every bit of this thread!!
I USED to do gun shows, bought some of my Best knives there. I'm NOT into guns, (too loud, also, have fshd a gun would only be taken from me) but, I Love knives & collect them.🤷🏼
A Few of my favorite pocket knives..Just a few..🤣😂
I USED to do gun shows, bought some of my Best knives there. I'm NOT into guns, (too loud, also, have fshd a gun would only be taken from me) but, I Love knives & collect them.🤷🏼
A Few of my favorite pocket knives..Just a few..🤣😂
I did a collab with a bunch of artists in a server I'm in!! (watch it here hehe www.youtube.com/watch?v=fSHd...) it was a cosplay themed one, so here's my sona as itachi B)
#art #sona #naruto
#art #sona #naruto
January 19, 2026 at 9:44 PM
I did a collab with a bunch of artists in a server I'm in!! (watch it here hehe www.youtube.com/watch?v=fSHd...) it was a cosplay themed one, so here's my sona as itachi B)
#art #sona #naruto
#art #sona #naruto