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...

Wearing our greens in the lab at Biobizkaia for #MyotonicDystrophy awareness day. @myotonicstrong.bsky.social

✉️ 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

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...

¡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...

¡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...

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! 💪✨

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

🌍 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...

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

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...

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...

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

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...

#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...

#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 (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...

💬 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...

💬 “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...

#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...

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...

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...

💬 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...

💚🏍️ Virginia is ready to welcome home Navy veteran and 9/11 first responder, & DM advocate Pat Cornell as he reaches the 125,000-mile milestone—continuing his record ride for #myotonicDystrophy awareness! Join the Newport News celebration Tuesday, Sept 2: www.facebook.com/events/68611...

💬 “I had to reconstruct my home to meet my needs.” 💬 “I spend hours acquiring special shoes.” 💬 “AFOs could prevent falls, but cost thousands without insurance.” How do accessible devices affect your life with #MyotonicDystrophy? 💚 ✍️ #ShareYourStory: www.myotonic.org/share-your-s...

💬 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 Accessible Equipment👉Get started: www.myotonic.org/share-your-s...

💬 “Every appointment brings expenses.” 💬 “It’s been expensive to reconfigure our house.”💬 "We’ve had to take out loans to make our house more accessible." How does #MyotonicDystrophy affect your life? 💚 ✍️ #ShareYourStory www.myotonic.org/share-your-s...

💬 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👉Get started: www.myotonic.org/share-your-s...

💬 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👉Get started: www.myotonic.org/share-your-s...

Thank you National Organization for Rare Disorders, Inc. (NORD) CEO Pamela Gavin for bringing together MDF, TESS Research Foundation, Jack McGovern Coats' Disease Foundation, & @cfricurecf.bsky.social. Great conversations on strengthening #RareDisease and #MyotonicDystrophy advocacy!

💬 “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 www.myotonic.org/share-your-s...

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 at: events.zoom.us/ev/Aq_1xcYZM...

🧠 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! 💬🔗 www.myotonic.org/ask-expert-s...

💬 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: www.myotonic.org/share-your-s...

💬 “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: www.myotonic.org/share-your-s...

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: www.myotonic.org/camp-joa-2025

🌍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: www.myotonic.org/internationa...

📢 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: www.myotonic.org/sites/defaul...

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_...

💬“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: www.myotonic.org/share-your-s...

💬 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👉 www.myotonic.org/share-your-s...

🚨 Exciting news from Avidity Biosciences! Enrollment is complete for the global Phase 3 HARBOR trial for treatment of adults (16+) living with #MyotonicDystrophy Type 1 (#DM1) - marking a big step forward for the DM community!🌍🔗Read their letter to the community: www.myotonic.org/sites/defaul...

💬 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: Getting to Medical Appointments. 👉 www.myotonic.org/share-your-s...

Keep moving with a flexibility demo by Dr. Koike for people living with #myotonicDystrophy! 🧘‍♀️💪 Join our last 2025 Movement Monday on the 28th for more flexibility & chair yoga practice.💚🔗 events.zoom.us/ev/Arvj_mjnG...

💬 “Halfway through the year & I have spent 8k out of pocket for medical costs.” 💬 “Keeping on top of the paperwork is a full time job.” How does navigating insurance & health systems affect your life with #MyotonicDystrophy? ✍️ 💚🔗 #ShareYourStory at: www.myotonic.org/share-your-s...

💬 Living with #myotonicDystrophy 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: Navigating Insurance / National Health Systems👉 www.myotonic.org/share-your-s...

👀 Let’s get moving with Dr. Kristina Kelly! Join us July 21 at 4PM PT / 7PM ET for #MovementMonday on #Aerobics & #Cardio—designed for those living with #MyotonicDystrophy. 💚 Seated or standing, there’s something for everyone! Register now at: events.zoom.us/e/view/fMdg2...

💬 “Even with muscle weakness in my hips & neck, I keep walking dogs.” 💬 “Basic chores cause aches & pains.” 💬 “Stairs & lifting—is now almost impossible.” How does muscle weakness affect your life with #MyotonicDystrophy? ✍️ 💚🔗 #ShareYourStory at: www.myotonic.org/share-your-s...

👀 Sneak peek of Movement Mondays: Balance & Fall Prevention, created for people living with #MyotonicDystrophy. 💚 Join Dr. Eichinger on Monday, July 14th at 4PM PST / 7PM EST! Register at: events.zoom.us/ev/Arvj_mjnG...

🏍️Together, we’re putting myotonic dystrophy on the map!💚 Pat Cornell is over 70,000 miles into his 125,000-mile ride to raise awareness for #myotonicDystrophy (DM) — a rare genetic disease affecting over 150,000 Americans. 👉Support the ride: give.myotonic.org/fundraiser/6...