📢 Healthcare professional who sees individuals with #myotonicDystrophy? Delays in diagnosis and gaps in treatment access persist—but your expertise can change that. Take the quick, anonymous DM INSIGHT survey to help improve care, access & outcomes: 🔗 myotonic.org/insight

💬“I have to take off time from my job.” 💬“I wouldn't be able to go to appointments without her help." 💬"I travel an hour for my specialists." How does getting to your medical appointments affect your life with #MyotonicDystrophy?✍️💚🔗 #ShareYourStory: myotonic.org/share-your-sto…

💬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: Accessing Specialty Care👉 myotonic.org/share-your-sto…

Been to an MDF Support Group? We want to hear from you! 💚🕐 Take 5 minutes to share your feedback and help us grow these spaces to better support the diverse needs of the #MyotonicDystrophy community. 🖊️🔗 Take the MDF Support Group Survey: myotonicdistribution.qualtrics.com/jfe/form/SV_6E…

📢 PepGen Shares Continued Progress on their Phase 1 & 2 Studies of PGN-EDODM1 for Adults with #myotonicDystrophy type 1. 🧬 Their Q2 newsletter also highlights how PepGen is continuing to engage with the DM community! 💬 Read more at: myotonic.org/sites/default/…

📢 PepGen Shares Continued Progress on their Phase 1 & 2 Studies of PGN-EDODM1 for Adults with #myotonicDystrophy type 1. 🧬 Their Q2 newsletter also highlights how PepGen is continuing to engage with the DM community! 💬 Read more at: myotonic.org/sites/default/…

🌍September 15th is International #MyotonicDystrophy Awareness Day! 📢 Raising awareness can be as easy as wearing green. 💚 Learn how your voice can help improve care and change the future of DM: myotonic.org/international-…

Our amazing community members living with with juvenile-onset #myotonicDystrophy are having an incredible time at MDF's #CampJOA! This week, they are fishing 🎣 ziplining, honing archery skills 🏹 & enjoying a great summer camp experience! 🌞 Learn more about Camp JOA:

Today, we shared our financial results for the second quarter and recent corporate highlights. Learn more: investors.pepgen.com/news-releases/…

💬 “Even when help exists, it may be unaffordable or unattainable.” 💬 “We use telemedicine.” 💬"It's frustrating to seek the care I need." How does accessing specialty care affect your life with #MyotonicDystrophy? ✍️💚🔗 #ShareYourStory at: myotonic.org/share-your-sto…

💬 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: Myotonia👉Get started: myotonic.org/share-your-sto…

2025年9月15日に筋強直性ジストロフィー患者会（DM-Family）が開催する「国際筋強直性ジストロフィー啓発の日 ティーパーティin大阪」にて、アビディティ・バイオサイエンスから参加者に向けたビデオメッセージを見ることができます。 dm-family.net/idma2025/

🧠 Have questions about #myotonicDystrophy? Check out MDF's series of “Ask-the-Expert” webinars with DM experts in diverse specialties! Register once for all the 2025 sessions and get early access to recordings! 💬🔗 myotonic.org/ask-expert-ser…

Join Dr. Andy Rohrwasser live on 🗓️ Friday, August 22nd at 12:00 PM Pacific / 3:00 PM Eastern for MDF's Ask the Expert: Genetics and #myotonicDystrophy! 👁️🧬 📝 Register to join 👉events.zoom.us/ev/Aq_1xcYZMnn…

Our Dynamos joined the DM community for Myotonic Dystrophy in Motion Awareness Month to show support for individuals and families. Thanks to everyone who participated!

💬 “I wouldn’t have to overthink basic movements or conversations.” 💬 “I’m strong and a feminist, but my myotonia means my husband often orders for me. It helps, but it’s demeaning.” How does #MyotonicDystrophy affect your life? 💚 ✍️ #ShareYourStory myotonic.org/share-your-sto…

Thank you National Organization for Rare Disorders (NORD) CEO Pamela Gavin for bringing together Myotonic Dystrophy Foundation, TESS Research Foundation, Jack McGovern Coats' Disease Foundation, and Cystic Fibrosis Research Institute. Great conversations on strengthening #RareDisease and #MyotonicDystrophy advocacy and building connections to help move our communities forward!

💬 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: the Cost of DM👉myotonic.org/share-your-sto…

Tomorrow is #NationalNonprofitDay! We’re proud to celebrate with our 350+ #nonprofit Member organizations representing 30 million Americans living with #RareDiseases. 💙🧡 NORD CEO Pamela Gavin recently met with leaders from Jack McGovern Coats' Disease Foundation, Myotonic Dystrophy Foundation, Cystic Fibrosis Research Institute, and