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Myotonic Dystrophy Foundation

@myotonicstrong.bsky.social

78 followers 9 following 150 posts

The world's largest patient organization focused solely on #myotonicDystrophy. Our mission is Community, Care, and a Cure. www.myotonic.org

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · Feb 21

We're excited to announce the release of Understanding #MyotonicDystrophy – Inheritance of Myotonic Dystrophy Type 1 (DM1)! 📢🎥 This animation provides a clear introduction to the genetic inheritance of DM1. 🧬 Share & spread awareness with this valuable resource! 💚✨ www.myotonic.org/understandin...

Understanding Myotonic Dystrophy – Inheritance of Myotonic Dystrophy Type 1 (DM1)

YouTube video by Myotonic Dystrophy Foundation

youtu.be

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 5d

Dyne Therapeutics shares new Phase 1/2 ACHIEVE trial results: zeleciment basivarsen (z-basivarsen, formerly DYNE-101) showed sustained improvements in muscle strength, myotonia & daily function for people living with #myotonicDystrophy (DM1) over 12 months. 🔗 investors.dyne-tx.com/news-release...

Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 13d

👉 🔬Join MDF's Meet the DM Drug Developer with Sanofi on October 3rd 🧬 for an update on their DM program! 📝 Register to attend! 💻https://events.zoom.us/ev/AqnDbQ6mPkdp9yGgaE1ex5c5W9lL4TkqfzhrML21JKmwduKDGLid~AufwK62MYtkD9tJAlDz-n2RnE-rQ_YgsFz0z4VQ6EiP5HdHvv6nRvJJd0w?lmt=1759419636000

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 21d

We're excited to announce the release of Understanding #MyotonicDystrophy – Inheritance of Myotonic Dystrophy Type 2 (DM2)! 📢🎥 This animation provides a clear introduction to the genetic inheritance of DM2. 🧬 Share & spread awareness with this valuable resource! 💚✨ www.myotonic.org/understandin...

Understanding Myotonic Dystrophy – Inheritance of Myotonic Dystrophy Type 2 (DM2)

YouTube video by Myotonic Dystrophy Foundation

youtu.be

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Reposted by Myotonic Dystrophy Foundation

Virginia Arechavala @varechavala.bsky.social · Sep 16

Wearing our greens in the lab at Biobizkaia for #MyotonicDystrophy awareness day.

@myotonicstrong.bsky.social

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 29d

✉️ Support the DM community—one letter at a time. Send a kind note, drawing, or story to brighten someone’s day.📝☀️
Meet John & Karen, the first recipients of our Community Connections program 💚👇https://www.myotonic.org/community-connections

Reposted by Myotonic Dystrophy Foundation

Institut de Myologie @institutdemyologie.bsky.social · Sep 15

We support International #MyotonicDystrophy Awareness Day! 💚 Learn more about research & trials conducted by our teams⤵️

#myotonicDystrophy #myotonicDystrophyAwareness

@afm-telethon.bsky.social @afmtelethonpresse.bsky.social @myotonicstrong.bsky.social

www.institut-myologie.org/2025/09/15/j...

Journée Internationale de sensibilisation à la Dystrophie Myotonique - Institut de Myologie

La Journée internationale de sensibilisation aux dystrophies myotoniques a lieu chaque année le 15 septembre. Elle a pour objectif de sensibiliser le corps médical, les responsables politiques et le g...

www.institut-myologie.org

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · Sep 16

¡Ahora en español: Recomendaciones sobre anestesia y #distrofiaMiotónica! La anestesia puede ser riesgosa en DM; este recurso ofrece información crucial para pacientes y familias.
#myotonicDystrophy
👉 www.myotonic.org/sites/defaul...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · Sep 16

¡Ahora disponible en español – Infografía sobre el ejercicio con #distrofiaMiotónica! El ejercicio puede optimizar la función corporal y mantener la fuerza. #myotonicDystrophy
👉 www.myotonic.org/sites/defaul...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · Sep 16

There's still time to Go #GreenForDM! Raising #myotonicDystrophy awareness is as simple as wearing green 💚 Join the MDF Team and the DM community — post your pic, use #myotonicDystrophy, and tag MDF to show your support on Awareness Day! 💪✨

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Reposted by Myotonic Dystrophy Foundation

Centre for Muscle Research (CMR) @unimelbcmr.bsky.social · Sep 15

The CMR gathers wearing green to celebrate International Myotonic Dystrophy Awareness Day to promote research & funding to improve the lives of those affected by DM, a neuromuscular disease causing progressive muscle weakness
@mda.org @myotonicstrong.bsky.social #muscle

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · Sep 15

🌍 60+ Global Alliance Organizations Recognize the 5th annual International #MyotonicDystrophy Awareness Day! 💚 We proudly celebrate the remarkable strength & resilience of the DM community around the world. 🌟 Read the full press release at www.myotonic.org/global-allia...

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Reposted by Myotonic Dystrophy Foundation

The RNA Institute @thernainstitute.bsky.social · Sep 12

In honor of International Myotonic Dystrophy Awareness Day (Sept15), these buildings will be lighting up in Green.
If you are near any of these buildings and happen to see them, please share a photo with us and/or share with us here and tag us.
@myotonicstrong.bsky.social #myotonicdystrophyawareness

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · Sep 10

Myotonic dystrophy symptoms usually become more severe with each generation, yet there is currently no cure and no approved treatments. Help us get closer to better care and a cure by spreading #myotonicDystrophy awareness on September 15! Learn more at: www.myotonic.org/internationa...

Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · Sep 10

People living with #myotonicDystrophy have a 50% chance of passing it on to their children. Early genetic testing and counseling can save lives! Help change the future of #myotonicDystrophy on September 15! Learn more at: www.myotonic.org/internationa...

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Reposted by Myotonic Dystrophy Foundation

The RNA Institute @thernainstitute.bsky.social · Sep 4

We are joining hands with @myotonicstrong.bsky.social to raise awareness of myotonic dystrophy this month. Did you know that September 15 is the International Myotonic Dystrophy Awareness Day?

#myotonicDystrophy
#myotonicDystrophyAwareness

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · Sep 8

Myotonic dystrophy is the most common form of adult muscular dystrophy and is considered the most variable of all known conditions. Help make it the most well-known on International #myotonicDystrophy Awareness Day, September 15! Learn more at: www.myotonic.org/internationa...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · Sep 8

#MyotonicDystrophy doesn’t always look the same! The different body systems affected, severity of symptoms, & age of onset vary greatly, even in the same family. Improve DM medical education, support #myotonicDystrophy Awareness on Sept 15th: www.myotonic.org/internationa...

Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · Sep 8

#myotonicDystrophy is commonly referred to as DM, an abbreviation of the Latin dystrophia myotonica. DM's other names include myotonic muscular dystrophy (MMD), Steinert’s Disease for DM1, and proximal myotonic myopathy (PROMM) for DM2. Learn more at: www.myotonic.org/internationa...

Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · Sep 5

Myotonic dystrophy (DM) may affect as many as 1 in 2,100 individuals across the world. Make it known in honor of International #myotonicDystrophy Awareness Day on Sept 15! Learn more at: www.myotonic.org/internationa...

Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · Sep 4

💬 Living with #myotonicDystrophy (DM1 or DM2) or a #Caregiver for someone who is? #ShareYourStory with our bonus or past prompts by September 16th!💚 Your experiences can improve care, coverage & understanding.✍️ This week’s topic: Hope & Resilience www.myotonic.org/share-your-s...

Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · Sep 4

💬 “We communicate significantly more.” 💬 “ I can't meet friends without help.”💬 "It's harder to do activities we once enjoyed together." How does #MyotonicDystrophy affect your life? 💚 ✍️ #ShareYourStory until September 16th at: www.myotonic.org/share-your-s...

Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · Sep 3

#MyotonicDystrophy is a rare, multi-systemic, inherited disease. It is caused by a mutation that prevents genes from carrying out functions properly. Help us get closer to a cure by spreading #myotonicDystrophy awareness on September 15th! Learn more at: www.myotonic.org/internationa...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · Sep 2

Did you know? Millions of people may be living with #myotonicDystrophy (DM) globally, yet most do not know they have the disease and need care. Help the world recognize DM on International #MyotonicDystrophy Awareness Day on Sept 15! Learn more at: www.myotonic.org/internationa...

Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · Sep 2

September 15th is International #MyotonicDystrophy Awareness Day! Learn how your voice can increase #myotonicDystrophy (DM) awareness, grow DM research funding, and advance policies to accelerate treatments and a cure DM. Learn more at: www.myotonic.org/internationa...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · Aug 28

💬 Living with #myotonicDystrophy (DM1 or DM2) or a #Caregiver for someone who is? This July–August, follow our weekly prompts to #ShareYourStory!💚 Your experiences can improve care, coverage & understanding.✍️ This week’s topic: Family Dynamics 👉Get started: www.myotonic.org/share-your-s...