#TheDreadedShave is more than a haircut. Inspired by his family’s connection to #MyotonicDystrophy, Tommy Lancaster is shaving 5 years of hair (63 cm) to raise awareness and funds for MDF. 💚 Support Tommy: give.myotonic.org/fundraiser/6...

✨ Happy Holidays from MDF! ✨ Sending warm wishes to everyone in the #MyotonicDystrophy community. We hope you have a peaceful, joyful, and connected holiday season. 💚

Congress has not passed a full-year FY2026 budget, putting NIH funding for #MyotonicDystrophy research at risk. Your voice matters. Urge Congress to protect and increase NIH support for DM research today: www.votervoice.net/Myotonic/Cam... #DMResearch #NIHFunding #RareDisease #Advocacy

From research to real hope. Incredible progress is happening in the search for DM treatments. This short film shows how donors like you are helping drive it. 📽️ youtu.be/FAEWQi2zcxA 🎁 Make your gift: giving.classy.org/campaign/622...

Trusted support. Clear guidance. Real care. Hear how MDF helped families facing myotonic dystrophy find the answers and resources they needed. 📽️ youtu.be/0FrufkB2fP0 🎁 Year-end giving: giving.classy.org/campaign/622...

Finding connection. Sharing stories. This is what community looks like for families living with myotonic dystrophy. Watch how MDF brings people together in our latest short film. 📽️ youtu.be/LiELjE34Djk 🎁 Donate: giving.classy.org/campaign/622...

👉 🔬Join MDF's Meet the DM Drug Developer with Dyne Therapeutics on December 5th 🧬 for an update on their DM program! 📝 Register to attend & get early access to the recording! 💻 events.zoom.us/ev/AqnDbQ6mP...

Your support means the world! 🌍 Thank you to everyone for supporting MDF and the #myotonicDystrophy community this #GivingTuesday! 💚 If you haven’t had a chance yet, there’s still time to give! give.myotonic.org/campaign/742...

Make an impact this #GivingTuesday! 💚 Your generosity brings hope to everyone affected by #MyotonicDystrophy. Every gift moves research forward & strengthens community programs. 🔗 give.myotonic.org/campaign/742...

Join the #MyotonicDystrophy Family Registry (MDFR) & change the future of DM research. 🔬Join or update your MDFR profile by Dec. 8 for a chance to win a $100 gift card! 💚🔗 Get started now at: www.myotonic.org/myotonic-dys...

✉️ Support the #myotonicDystrophy community—one letter at a time. Send a kind note, drawing, or story to brighten someone’s day.📝☀️ Meet Josephine & Janice 💚👇Learn more: www.myotonic.org/community-co...

✨ 💚 Discover practical “life hacks” from the #myotonicDystrophy community in our next Ask-the-Expert webinar! 🔗Register & learn new strategies with us: events.zoom.us/ev/AioUdcQWO...

This #GivingTuesday, help change the future of #myotonicDystrophy! 💪 Start your own fundraiser or donate to support community, care, and a cure with MDF. 💚🔗 Get started at: www.myotonic.org/givingtuesda...

👉 🔬Join MDF's Meet the DM Drug Developer with PepGen on November 7th 🧬 for an update on their DM program! 📝 Register to attend! 💻https://events.zoom.us/ev/AqnDbQ6mPkdp9yGgaE1ex5c5W9lL4TkqfzhrML21JKmwduKDGLid~AufwK62MYtkD9tJAlDz-n2RnE-rQ_YgsFz0z4VQ6EiP5HdHvv6nRvJJd0w?lmt=1759419636000

October is National #DisabilityEmployment Month. 13% of #MyotonicDystrophy Registry participants say work was able to adjust their job to accommodate physical limitations. 💚 📊 Registries are key to quality of life for the DM community. 🔬🔗Learn more at: www.myotonic.org/myotonic-dys...

Own a Piece of History! Bid for Pat Cornell’s Awareness Flag and get your $50 Commemorative Challenge Coin celebrating his 146,000-mile ride for #MyotonicDystrophy awareness. #RideForDM #pat125k 🔗 www.myotonic.org/pat125-auction

Proud to partner with #DyneTherapeutics and #EngageHealthInc at #NORDSummit 💙 Together we shared early findings from our Health Insurance Literacy in #myotonicDystrophy Type 1 (DM1) study—highlighting how collaboration helps move research forward and strengthens the #RareDisease community.

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...

👉 🔬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

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...