Join us Friday, April 3 for Meet the #myotonicDystrophy Drug Developers with Sarepta Therapeutics. Learn how their investigational DM1 therapy (SRP-1003) reaches muscle tissue. 💚🔬
Register: events.zoom.us/ev/AuhDDPjs6...
Don’t miss presentations from leading #myotonicDystrophy expert Dr. Jeffrey M. Statland at the 2026 MDF Regional Conference in Kansas City 💚
Join us April 11 for a day of connection, learning, and community.
Register now: give.myotonic.org/event/kansas...
MDF & Wake Forest University invite you to attend the 2026 MDF Regional Conference in 📍Winston-Salem on 🗓️May 2nd!
Join local #myotonicDystrophy communities 🤝 and connect with local researchers and clinicians 🧬.
🔗Learn more at: www.myotonic.org/2026-mdf-reg...
MDF & Stanford invite you to attend the 2026 MDF Regional Conference in 📍Palo Alto on 🗓️April 25th!
Join local #myotonicDystrophy communities 🤝 and connect with local researchers and clinicians 🧬.
🔗Learn more at: www.myotonic.org/2026-mdf-reg...
💚 Save the Date: 2026 MDF Gala!
Join us October 10 in San Francisco as we celebrate the #myotonicDystrophy community and support our mission of Community, Care, and a Cure.
🎟️ Registration opens soon!
Learn more: www.myotonic.org/2026-mdf-gala
MDF & University of Iowa invite you to attend the 2026 MDF Regional Conference in 📍Kansas City on 🗓️April 11th! 💚 Join local #myotonicDystrophy communities 🤝 and connect with local researchers and clinicians 🧬. 🔗Learn more at: www.myotonic.org/2026-mdf-reg...
We're bringing the 2026 #MDFconference to a city near YOU! 🙌 These one-day conferences connect local #myotonicDystrophy communities, researchers and clinicians. 💚
Explore hotel 🏨 & mobility 🦽 discounts, financial aid, & register to attend a Regional Conference: www.myotonic.org/join-us-2026...
John Cooley, MDF National Advocacy Committee Member & Support Group Facilitator.
📣 The myotonic dystrophy community needs your voice today!
Ask your U.S. Representative to sign the bipartisan Moskowitz–Kiggans letter supporting $10M for myotonic dystrophy research before the March 19 deadline.
Take action now: www.votervoice.net/Myotonic/Cam...
#MyotonicDystrophy
✉️ Support the #myotonicDystrophy community—one letter at a time. Send a kind note, drawing, or story to brighten someone’s day.📝☀️Get started & learn more about our latest recipients at: www.myotonic.org/community-co...
Finalizamos el Día Internacional de Concienciación sobre la #DistrofiaMiotónica con un libro muy práctico sobre la Distrofia Miotónica Tipo 1, #DM1 o Enfermedad de #Steinert http://bit.ly/DM1Los
#DíadelasEnfermedadesRaras #EnfermedadesRaras #MyotonicDystrophy #DM1 #Steinert
Fortunately, there are currently more than 35 companies researching to find a cure or a treatment for #MyotonicDystrophy. Our hope is that they will succeed soon
#DíadelasEnfermedadesRaras #RareDiseaseDay #RareDiseases #DistrofiaMiotónica #MyotonicDystrophy #DM1 #Steinert
Afortunadamente, en la actualidad hay más de 35 empresas que están investigando para encontrar una cura o un tratamiento para la #DistrofiaMiotónica. Nuestra esperanza es que tengan éxito en breve
#DíadelasEnfermedadesRaras #RareDiseaseDay #MyotonicDystrophy #DM1 #Steinert
Actualmente no existe ninguna cura para la #DistrofiaMiotónica ni tratamientos específicos. Únicamente hay tratamientos para mitigar sus síntomas
#DíadelasEnfermedadesRaras #EnfermedadesRaras #RareDiseaseDay #RareDiseases #DistrofiaMiotónica #MyotonicDystrophy #DM1 #Steinert
Currently, there is no cure or specific treatments for #MyotonicDystrophy. There are only treatments to alleviate its symptoms
#28F #DíadelasEnfermedadesRaras #EnfermedadesRaras #RareDiseaseDay #RareDiseases #DistrofiaMiotónica #MyotonicDystrophy #DM1 #Steinert
At birth, symptoms of Myotonic Dystrophy Type 1 can include difficulty swallowing or sucking and breathing, absence of reflexes, deformities, and muscle weakness
#DíadelasEnfermedadesRaras #RareDiseaseDay #RareDiseases #DistrofiaMiotónica #MyotonicDystrophy #DM1 #Steinert
#MyotonicDystrophy has many degrees of severity, and even within the same family it is likely that not all members will have the same symptoms
Al nacer los síntomas de #DistrofiaMiotónica Tipo 1 pueden ser dificultad para tragar o succionar y respirar, ausencia de reflejos, deformidades y debilidad muscular
#DíadelasEnfermedadesRaras #RareDiseaseDay #DistrofiaMiotónica #MyotonicDystrophy #DM1 #Steinert
#MyotonicDystrophy affects the central nervous system and other body systems: heart, adrenal glands, thyroid, eyes, gastrointestinal tract, etc.
#DíadelasEnfermedadesRaras #EnfermedadesRaras #RareDiseaseDay #RareDiseases #DistrofiaMiotónica #MyotonicDystrophy #DM1 #Steinert
La #DistrofiaMiotónica afecta al sistema nervioso central y otros sistemas corporales: corazón, glándulas suprarrenales, tiroides, ojos, tracto gastrointestinal, etc.
#DíadelasEnfermedadesRaras #RareDiseaseDay #DistrofiaMiotónica #MyotonicDystrophy #DM1 #Steinert
When transmission is hereditary, #MyotonicDystrophy shows anticipation. Symptoms appear earlier and in a more severe form than in the parents
#28F #DíadelasEnfermedadesRaras #EnfermedadesRaras #RareDiseaseDay #RareDiseases #DistrofiaMiotónica #MyotonicDystrophy #DM1 #Steinert
#MyotonicDystrophy is an autosomal dominant hereditary disease. If only one member of the couple has it, the probability of passing it on to their children is 50%
#DíadelasEnfermedadesRaras #RareDiseaseDay #RareDiseases #DistrofiaMiotónica #MyotonicDystrophy #DM1 #Steinert
La #DistrofiaMiotónica es una enfermedad hereditaria autosómica dominante. Si sólo un miembro de la pareja la padece, la probabilidad de transmitirla a sus hijos es del 50%
#DíadelasEnfermedadesRaras #EnfermedadesRaras #RareDiseaseDay #MyotonicDystrophy #DM1 #Steinert
In Europe, #MyotonicDystrophy affects 1 in every 11,400 adults and Myotonic Dystrophy Type 1 affects 1 in every 20,000. Worldwide, Myotonic Dystrophy affects 1 in every 15,000 adults and Myotonic Dystrophy Type 1 affects 1 in every 8,000 adults
#RareDiseaseDay #RareDiseases #DM1
Millions of people affected by #MyotonicDystrophy remain undiagnosed, which leads to potential life‑threatening risks, for example in the case of a simple surgical procedure with anesthesia
Millones de afectados por #DistrofiaMiotónica están sin diagnósticar. Lo que redunda en posibles riesgos para su vida, por ejemplo en caso de una simple intervención quirúrgica con anestesia
#DíadelasEnfermedadesRaras #EnfermedadesRaras #RareDiseaseDay #MyotonicDystrophy #DM1
The diagnosis of #MyotonicDystrophy requires a genetic test, which is not always possible or affordable
#DíadelasEnfermedadesRaras #EnfermedadesRaras #RareDiseaseDay #RareDiseases #DistrofiaMiotónica #MyotonicDystrophy #DM1 #Steinert
El diagnóstico de la #DistrofiaMiotónica requiere de un análisis genético que no siempre es posible o es barato
#28F #DíadelasEnfermedadesRaras #EnfermedadesRaras #RareDiseaseDay #RareDiseases #DistrofiaMiotónica #MyotonicDystrophy #DM1 #Steinert
Two types of #MyotonicDystrophy are known, depending on the gene in which the nucleotide expansion that causes the disease occurs: Myotonic Dystrophy Type 1, also called DM1 or Steinert Disease (DMPK gene), and Myotonic Dystrophy Type 2 or DM2 (ZNF9 gene)
Today, on #RareDiseaseDay, we want to stand with everyone affected by any of them and, especially, with those affected by #MyotonicDystrophy Type 1, with patients, caregivers and, of course, researchers
#RareDiseases #DistrofiaMiotónica #DM1 #Steinert
