Morning off to attend my annual rdv medical for #charcotmarietooth disorder. Always good to have a doctor taking notes (in a good way, to help other patients). Good doctors, good services, are hard to find so I’m pleased to have one that is patient focused.
June 1, 2026 at 9:01 AM
Morning off to attend my annual rdv medical for #charcotmarietooth disorder. Always good to have a doctor taking notes (in a good way, to help other patients). Good doctors, good services, are hard to find so I’m pleased to have one that is patient focused.
April 30, 2025 at 2:31 PM
#wheelchairrugby #wheelchairsports #disabilitysports #charcotmarietooth #charcotmarietoothdisease #musculardystrophy #wheelchair #disability
November 30, 2024 at 11:59 AM
After 9 years in France, I’ve finally found a kiné that can help me to manage my body well. But omg I forgot how painful these visits can be. Need a lie down to recover. #charcotmarietooth #ehlersdanlos
July 17, 2026 at 6:12 AM
After 9 years in France, I’ve finally found a kiné that can help me to manage my body well. But omg I forgot how painful these visits can be. Need a lie down to recover. #charcotmarietooth #ehlersdanlos
September is #CharcotMarieTooth Disease Awareness month!
Tune into this #sciencepodcast episode with advocates Bernadette Scarduzio & Allison Moore to learn more about #CMT and related nerve disorders ⬇️⬇️⬇️
dnapodcast.com/episodes/201...
Tune into this #sciencepodcast episode with advocates Bernadette Scarduzio & Allison Moore to learn more about #CMT and related nerve disorders ⬇️⬇️⬇️
dnapodcast.com/episodes/201...
#52 Charcot Marie Tooth Interview — DNA Today
Patient advocates Bernadette Scarduzio and Allison Moore share about CMT, their documentary and the Hereditary Neuropathy Foundation.
dnapodcast.com
September 25, 2026 at 1:01 PM
September is #CharcotMarieTooth Disease Awareness month!
Tune into this #sciencepodcast episode with advocates Bernadette Scarduzio & Allison Moore to learn more about #CMT and related nerve disorders ⬇️⬇️⬇️
dnapodcast.com/episodes/201...
Tune into this #sciencepodcast episode with advocates Bernadette Scarduzio & Allison Moore to learn more about #CMT and related nerve disorders ⬇️⬇️⬇️
dnapodcast.com/episodes/201...
Anyone else out there with #charcotmarietooth want to talk? I need community...
April 30, 2025 at 1:02 PM
Anyone else out there with #charcotmarietooth want to talk? I need community...
It's a chilly, rainy December day in North Carolina. I love it! How is it your way?
#northcarolina #December #weather ##MondayMotivaton #spoonie #spoonielife #author #writer #disability ##charcotmarietooth #sjorgens #neuropathy #chronicillness #chronicpain #disabilityadvocate #chat #lgbtq 🌈
#northcarolina #December #weather ##MondayMotivaton #spoonie #spoonielife #author #writer #disability ##charcotmarietooth #sjorgens #neuropathy #chronicillness #chronicpain #disabilityadvocate #chat #lgbtq 🌈
December 9, 2024 at 9:52 PM
It's a chilly, rainy December day in North Carolina. I love it! How is it your way?
#northcarolina #December #weather ##MondayMotivaton #spoonie #spoonielife #author #writer #disability ##charcotmarietooth #sjorgens #neuropathy #chronicillness #chronicpain #disabilityadvocate #chat #lgbtq 🌈
#northcarolina #December #weather ##MondayMotivaton #spoonie #spoonielife #author #writer #disability ##charcotmarietooth #sjorgens #neuropathy #chronicillness #chronicpain #disabilityadvocate #chat #lgbtq 🌈
Our 2024 survey on the invisible issues faced by the #neurology patient community has now been re-analysed with a focus on rare neurological conditions: https://www.efna.net/wp-content/uploads/2026/02/EFNA-Rare-Neurology-Data-Policy.pdf
#RareDiseaseDay #MyastheniaGravis #Dystonia #CharcotMarieTooth
#RareDiseaseDay #MyastheniaGravis #Dystonia #CharcotMarieTooth
February 28, 2026 at 10:00 AM
Our 2024 survey on the invisible issues faced by the #neurology patient community has now been re-analysed with a focus on rare neurological conditions: https://www.efna.net/wp-content/uploads/2026/02/EFNA-Rare-Neurology-Data-Policy.pdf
#RareDiseaseDay #MyastheniaGravis #Dystonia #CharcotMarieTooth
#RareDiseaseDay #MyastheniaGravis #Dystonia #CharcotMarieTooth
October 25, 2025 at 4:19 AM
#CharcotMarieTooth Disease Awareness Month.
The most common rare disease you've never heard of?
#CMT is a hereditary condition that damages the peripheral nerves - located outside of the brain and spinal cord - causing disabilty in the feet, legs, hands and arms
www.cmtausa.org/letsbeatcmt/
The most common rare disease you've never heard of?
#CMT is a hereditary condition that damages the peripheral nerves - located outside of the brain and spinal cord - causing disabilty in the feet, legs, hands and arms
www.cmtausa.org/letsbeatcmt/
#LetsBeatCMT
#LetsBeatCMT is a social media initiative during CMT Awareness Month to encourage the Charcot-Marie-Tooth disease community to share their CMT experiences.
www.cmtausa.org
August 21, 2024 at 7:58 AM
#CharcotMarieTooth Disease Awareness Month.
The most common rare disease you've never heard of?
#CMT is a hereditary condition that damages the peripheral nerves - located outside of the brain and spinal cord - causing disabilty in the feet, legs, hands and arms
www.cmtausa.org/letsbeatcmt/
The most common rare disease you've never heard of?
#CMT is a hereditary condition that damages the peripheral nerves - located outside of the brain and spinal cord - causing disabilty in the feet, legs, hands and arms
www.cmtausa.org/letsbeatcmt/
The critical importance of diagnosis in empowering patients and doctors
A doctor’s personal battle with #CharcotMarieTooth disease #CMT, a rare genetic disorder of the nervous system
thesouthfirst.com/health/a-doc...
A doctor’s personal battle with #CharcotMarieTooth disease #CMT, a rare genetic disorder of the nervous system
thesouthfirst.com/health/a-doc...
A doctor's personal battle with genetic disease CMT becomes a beacon of hope for many
Dr Priyanshu Agrawal did not know he was affected by Charcot-Marie-Tooth disease, a genetic disorder, primarily affecting the nervous system. Once diagnosed, he started his fight against the disease.
thesouthfirst.com
May 9, 2024 at 6:46 AM
The critical importance of diagnosis in empowering patients and doctors
A doctor’s personal battle with #CharcotMarieTooth disease #CMT, a rare genetic disorder of the nervous system
thesouthfirst.com/health/a-doc...
A doctor’s personal battle with #CharcotMarieTooth disease #CMT, a rare genetic disorder of the nervous system
thesouthfirst.com/health/a-doc...
🇪🇺New €380m EU #RareDiseases partnership
Hope for #CharcotMarieTooth (CMT) & other rare diseases affecting 30 million people in Europe
🧬#CMT is the most common inherited neurological condition but no cure: ecmtf.org/about-cmt/
#CMTAwarenessMonth
www.researchprofessionalnews.com/rr-news-euro...
Hope for #CharcotMarieTooth (CMT) & other rare diseases affecting 30 million people in Europe
🧬#CMT is the most common inherited neurological condition but no cure: ecmtf.org/about-cmt/
#CMTAwarenessMonth
www.researchprofessionalnews.com/rr-news-euro...
EU launches €380m partnership on rare diseases - Research Professional News
Initiative will coordinate research to “deliver significant health benefits”
www.researchprofessionalnews.com
September 14, 2024 at 6:20 AM
🇪🇺New €380m EU #RareDiseases partnership
Hope for #CharcotMarieTooth (CMT) & other rare diseases affecting 30 million people in Europe
🧬#CMT is the most common inherited neurological condition but no cure: ecmtf.org/about-cmt/
#CMTAwarenessMonth
www.researchprofessionalnews.com/rr-news-euro...
Hope for #CharcotMarieTooth (CMT) & other rare diseases affecting 30 million people in Europe
🧬#CMT is the most common inherited neurological condition but no cure: ecmtf.org/about-cmt/
#CMTAwarenessMonth
www.researchprofessionalnews.com/rr-news-euro...
JAX's Robert Burgess is collaborating on a project for the CMT Research Foundation, a non-profit focusing on delivering treatments and cures for #CharcotMarieTooth disease:
🧪🤝🖥️ 🧬 #raredisease
bit.ly/3IkDe1j
🧪🤝🖥️ 🧬 #raredisease
bit.ly/3IkDe1j
CMT Research Foundation Partners to Advance Study of CMT1J by Dr. Stephan Zuchner | CMT Research Foundation
Read
bit.ly
March 27, 2024 at 12:21 PM
JAX's Robert Burgess is collaborating on a project for the CMT Research Foundation, a non-profit focusing on delivering treatments and cures for #CharcotMarieTooth disease:
🧪🤝🖥️ 🧬 #raredisease
bit.ly/3IkDe1j
🧪🤝🖥️ 🧬 #raredisease
bit.ly/3IkDe1j
🎉 Congrats to @jacksonlab.bsky.social Ph.D. candidate, Jonathan Funke, for being awarded a NINDS F31 NRSA fellowship for his project, "Investigating the Contribution of Motor Neuronal Mitochondria to #CharcotMarieTooth Type 2D (CMT2D)."
#JAXTrainee #Neuroskyence
#JAXTrainee #Neuroskyence
August 26, 2025 at 8:03 PM
🎉 Congrats to @jacksonlab.bsky.social Ph.D. candidate, Jonathan Funke, for being awarded a NINDS F31 NRSA fellowship for his project, "Investigating the Contribution of Motor Neuronal Mitochondria to #CharcotMarieTooth Type 2D (CMT2D)."
#JAXTrainee #Neuroskyence
#JAXTrainee #Neuroskyence
This new ARRCT #OpenAccess article in press examines a multidimensional fall risk assessment using the Timed Up and Go test in individuals with Charcot–Marie–Tooth type 1A.
Full article:https://www.sciencedirect.com/science/article/pii/S2590109525001557
#ARRCT #FallRisk #CharcotMarieTooth #ACRM
Full article:https://www.sciencedirect.com/science/article/pii/S2590109525001557
#ARRCT #FallRisk #CharcotMarieTooth #ACRM
January 6, 2026 at 1:43 PM
This new ARRCT #OpenAccess article in press examines a multidimensional fall risk assessment using the Timed Up and Go test in individuals with Charcot–Marie–Tooth type 1A.
Full article:https://www.sciencedirect.com/science/article/pii/S2590109525001557
#ARRCT #FallRisk #CharcotMarieTooth #ACRM
Full article:https://www.sciencedirect.com/science/article/pii/S2590109525001557
#ARRCT #FallRisk #CharcotMarieTooth #ACRM
This new ARRCT #OpenAccess article in press examines a multidimensional fall risk assessment using the Timed Up and Go test in individuals with Charcot–Marie–Tooth type 1A.
Full article:https://www.sciencedirect.com/science/article/pii/S2590109525001557
#ARRCT #FallRisk #CharcotMarieTooth #ACRM
Full article:https://www.sciencedirect.com/science/article/pii/S2590109525001557
#ARRCT #FallRisk #CharcotMarieTooth #ACRM
January 10, 2026 at 1:43 PM
This new ARRCT #OpenAccess article in press examines a multidimensional fall risk assessment using the Timed Up and Go test in individuals with Charcot–Marie–Tooth type 1A.
Full article:https://www.sciencedirect.com/science/article/pii/S2590109525001557
#ARRCT #FallRisk #CharcotMarieTooth #ACRM
Full article:https://www.sciencedirect.com/science/article/pii/S2590109525001557
#ARRCT #FallRisk #CharcotMarieTooth #ACRM
Our 2024 survey on the invisible issues faced by the #neurology patient community has now been re-analysed with a focus on rare neurological conditions: https://www.efna.net/wp-content/uploads/2026/02/EFNA-Rare-Neurology-Data-Policy.pdf
#RareDisease #MyastheniaGravis #Dystonia #CharcotMarieTooth
#RareDisease #MyastheniaGravis #Dystonia #CharcotMarieTooth
February 17, 2026 at 10:54 AM
Our 2024 survey on the invisible issues faced by the #neurology patient community has now been re-analysed with a focus on rare neurological conditions: https://www.efna.net/wp-content/uploads/2026/02/EFNA-Rare-Neurology-Data-Policy.pdf
#RareDisease #MyastheniaGravis #Dystonia #CharcotMarieTooth
#RareDisease #MyastheniaGravis #Dystonia #CharcotMarieTooth
🎙Episodio 51 de The Akari Foundation Podcast “Superando la Fuerza de los Músculos, La Historia de Manuel Nissim”
🎧Escúchalo y suscríbete en tu plataforma de podcast favorita: theakarifoundation.org/podcast/
¡Únete a nuestra comunidad!💙
#TheAkariFoundationPodcast #CharcotMarieTooth
🎧Escúchalo y suscríbete en tu plataforma de podcast favorita: theakarifoundation.org/podcast/
¡Únete a nuestra comunidad!💙
#TheAkariFoundationPodcast #CharcotMarieTooth
August 18, 2025 at 4:05 PM
🎙Episodio 51 de The Akari Foundation Podcast “Superando la Fuerza de los Músculos, La Historia de Manuel Nissim”
🎧Escúchalo y suscríbete en tu plataforma de podcast favorita: theakarifoundation.org/podcast/
¡Únete a nuestra comunidad!💙
#TheAkariFoundationPodcast #CharcotMarieTooth
🎧Escúchalo y suscríbete en tu plataforma de podcast favorita: theakarifoundation.org/podcast/
¡Únete a nuestra comunidad!💙
#TheAkariFoundationPodcast #CharcotMarieTooth
I went to AS220 in Providence, RI today for the opening of this art exhibit. The artist has CMT, inherited from his mother, and the art here shows his evolving relationship to this disability #CharcotMarieTooth
May 4, 2025 at 2:01 AM
I went to AS220 in Providence, RI today for the opening of this art exhibit. The artist has CMT, inherited from his mother, and the art here shows his evolving relationship to this disability #CharcotMarieTooth
👨⚕️Dirigido por David Herrmann, Lic. en Medicina y Cirugía, en la Universidad de Rochester, el estudio ACT-CMT une a un grupo a nivel mundial de Centros de Excelencia de la CMTA.
🔗Lee el artículo completo en el siguiente link: lnkd.in/eXqFnWY7
#TheAkariFoundation #CharcotMarieTooth
🔗Lee el artículo completo en el siguiente link: lnkd.in/eXqFnWY7
#TheAkariFoundation #CharcotMarieTooth
January 23, 2026 at 8:16 PM
👨⚕️Dirigido por David Herrmann, Lic. en Medicina y Cirugía, en la Universidad de Rochester, el estudio ACT-CMT une a un grupo a nivel mundial de Centros de Excelencia de la CMTA.
🔗Lee el artículo completo en el siguiente link: lnkd.in/eXqFnWY7
#TheAkariFoundation #CharcotMarieTooth
🔗Lee el artículo completo en el siguiente link: lnkd.in/eXqFnWY7
#TheAkariFoundation #CharcotMarieTooth
Was informed by my #neurologist that this #Wyeth painting depicts a woman with Charcot Marie Tooth disease... and then she diagnosed me with it.
I've rolled around in the hills of the Brandywine (in khaki shorts, secondhand Merrells, also on shrooms) this is literally me.
#charcotmarietooth
I've rolled around in the hills of the Brandywine (in khaki shorts, secondhand Merrells, also on shrooms) this is literally me.
#charcotmarietooth
September 21, 2026 at 3:32 AM
Was informed by my #neurologist that this #Wyeth painting depicts a woman with Charcot Marie Tooth disease... and then she diagnosed me with it.
I've rolled around in the hills of the Brandywine (in khaki shorts, secondhand Merrells, also on shrooms) this is literally me.
#charcotmarietooth
I've rolled around in the hills of the Brandywine (in khaki shorts, secondhand Merrells, also on shrooms) this is literally me.
#charcotmarietooth
Q&A with Pappy LIVE at Noon EST
= #YouTube : www.youtube.com/@the_gerg
Come hangout in chat and ask us questions about CMT, Video Games, Movies, Music, etc.
@ourtaco.bsky.social #CharcotMarieTooth #Stream4CMT
= #YouTube : www.youtube.com/@the_gerg
Come hangout in chat and ask us questions about CMT, Video Games, Movies, Music, etc.
@ourtaco.bsky.social #CharcotMarieTooth #Stream4CMT
The Gerg
Hi my name is Greg but everyone calls me Gerg. I'm just a guy with Charcot Marie Tooth Disease trying to play video games, upload, make shorts, and maybe do a podcast or two just to entertain you all.
www.youtube.com
May 2, 2025 at 3:09 PM
Q&A with Pappy LIVE at Noon EST
= #YouTube : www.youtube.com/@the_gerg
Come hangout in chat and ask us questions about CMT, Video Games, Movies, Music, etc.
@ourtaco.bsky.social #CharcotMarieTooth #Stream4CMT
= #YouTube : www.youtube.com/@the_gerg
Come hangout in chat and ask us questions about CMT, Video Games, Movies, Music, etc.
@ourtaco.bsky.social #CharcotMarieTooth #Stream4CMT
#CharcotMarieTooth disease variants of HSPB1 decrease signalling in young animals and accelerate the aging process.
Check out the Research Article for free by Iman Aolymat and Jeff W. Barclay: doi.org/10.1242/dmm....
Check out the Research Article for free by Iman Aolymat and Jeff W. Barclay: doi.org/10.1242/dmm....
September 14, 2026 at 1:30 PM
#CharcotMarieTooth disease variants of HSPB1 decrease signalling in young animals and accelerate the aging process.
Check out the Research Article for free by Iman Aolymat and Jeff W. Barclay: doi.org/10.1242/dmm....
Check out the Research Article for free by Iman Aolymat and Jeff W. Barclay: doi.org/10.1242/dmm....