Myotonic Dystrophy Foundation
@MyotonicStrong
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The world's largest patient organization focused solely on #myotonicDystrophy. Our mission is Community, Care, and a Cure.
663 13th Street, Oakland, CA
Joined July 2009
What is #MyotonicDystrophy? How does it affect the body? Why is personalized care so important? Watch our NEW animation 🎥 “Understanding Myotonic Dystrophy - The Basics” to learn more! 🌟 Perfect for families and healthcare providers! 💡 Help spread DM awareness - share now! 💚
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💚 Ready to make a difference in #myotonicDystrophy for #RareDiseaseDay? 📢Join us on Feb 11th at 4 PM PT for our Advocate Training webinar! 🌟Get tools to confidently champion DM research funding! Register now:
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Check out the latest updates to the #myotonicDystrophy Drug Development Pipeline! 🧬 Designed by MDF, this pipeline is in ongoing development 🔄 & based on publicly available information. 🌐 💚 View the latest version:
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RT @myotonica_info: 2025年2月24日(祝)、筋強直性ジストロフィー患者会（DM-Family）は会員限定交流会「先天型親の会－子どもが歩けるようになるまでとこれから」を開催します。子どもが歩けるようになるまでを、会員の父親が話します。東京女子医科大学 小…
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🎉 Meet our 2024 Pilot Grant Recipient, Dr. Emma Matthews! 🌟 She is leading a groundbreaking project to uncover why #MyotonicDystrophy type 1 (DM1) patients are prone to abnormal lipid levels, known as dyslipidemia 🩺🧬. 🔗 Learn more at
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🚨#RareDiseaseDay is February 28th! 🚨 Join us in raising awareness about #myotonicDystrophy all month long! 💚🔗 Find ways to get started at:
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Is your loved one accounted for in the #MyotonicDystrophy Family Registry (MDFR)? 💚 DM often impacts entire families, with 80% of MDFR participants reporting a loved one also affected by DM. 📊 Participation in the MDFR strengthens research and community. 🤝 Learn more at:
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🚨 Don't miss our first #MyotonicDystrophy Drug Developer session of 2025 with @Dyne_tx on Feb 7th! 🧬 Get the latest updates on their DM1 program & new clinical data from their ongoing phase 1/2 ACHIEVE trial! 💚 Register now:
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RT @Dyne_tx: On Feb 7, we’ll join @myotonicstrong to share the recently announced clinical data from our ACHIEVE study of DYNE-101. Registe…
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🚨 NIH operations are paused, delaying vital #MyotonicDystrophy research. 📢 Contact Congress now to urge them to lift these NIH restrictions and protect critical DM research. 📝 Take action to keep progress moving forward for families living with DM:
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🚨 Calling all #MyotonicDystrophy researchers! 🚨 Showcase your work to a global audience at the 2025 MDF Conference! Open to doctoral students, postdocs, academics & industry professionals—submit your poster abstract by Feb 7! Apply now:
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RT @MD_Canada: Each year, @MD_Canada and @NMD4Canada proudly award fellowship funding to support early-career scientists and clinicians who…
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🌟 A new publication in the Journal of Neuromuscular Diseases, International Collaboration to Improve Knowledge on #MyotonicDystrophy Type 2, has provided insights to support earlier diagnosis 🩺 and improved care 💚 for people living with DM2.🔗
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📣 The 2025 MDF Conference agenda is here! 🎉 Start planning your experience in Indianapolis, May 2-4 (Pro Track starts May 1). Explore sessions on #myotonicDystrophy research, symptom management, & more, plus networking & wellness activities! 💚
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💚 Ready to make a difference in #myotonicDystrophy for #RareDiseaseDay? 📢Join us on Feb 11th at 4 PM PT for our Advocate Training webinar! 🌟Get tools to confidently champion DM research funding! Register now:
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RT @GTRecerca: 🆕 IGTP has secured over €3.5 million to establish a national network addressing challenges of myotonic dystrophy type 1 ✅ T…
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RT @DM1research: French study: Evaluation of professional practices in the use of mexiletine for the management of childhood myotonia in Fr…
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🚨 Don't miss our first #MyotonicDystrophy Drug Developer session of 2025 with @Dyne_tx on Feb 7th! 🧬 Get the latest updates on their DM1 program & new clinical data from their ongoing phase 1/2 ACHIEVE trial! 💚 Register now:
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🌲✨ Calling all adults 18+ with juvenile onset #myotonicDystrophy! 🌟 Join us for Camp JOA 2025 at Easterseals' Timber Pointe Outdoor Center in Hudson, IL, Aug 3-7. 🎯 Zipline, archery, s'mores & more—Camp JOA is FREE! 💚 Sign-up now:
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