✉️ Support the #myotonicDystrophy community—one letter at a time. Send a kind note, drawing, or story to brighten someone’s day.📝☀️Get started & learn more about our latest recipients at: www.myotonic.org/community-co...
🚨Today, February 28th, is Rare Disease Day! 🚨 Your voice matters! Join us in raising #myotonicDystrophy awareness! 💚🔗 Start Now: www.myotonic.org/rare-disease...
The 🌍 Global Alliance for #MyotonicDystrophy Awareness unites to honor #RareDisease Day 2026! 💚 Over 60 organizations 🤝 collaborate around the world to advance understanding 🧠, care ❤️, and research 🔬 for DM.
🔗Read the Press Release: www.myotonic.org/global-allia...
Avidity Biosciences Press Release on Phase 1/2 Trial Results
Exciting new clinical trial results for del-desiran in #myotonicDystrophy type 1 (DM1) showed an approximate 40% reduction in toxic DMPK mRNA in muscle, with associated improvements in myotonia, strength, and mobility.
Read the press release: prn.to/4u0khrA
🚨#RareDiseaseDay is February 28th! 🚨 Join us in raising awareness about #myotonicDystrophy all month long! 💚🔗 Find ways to get started: www.myotonic.org/rare-disease...
Inspired by Tommy? You can support the #DM community in your own way by starting a #DIYFundraiser with MDF.
👉 www.myotonic.org/fundraise-co...
#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
✨ Happy Holidays from MDF! ✨
Sending warm wishes to everyone in the #MyotonicDystrophy community. We hope you have a peaceful, joyful, and connected holiday season. 💚
Quote from MDF Advocates Jeannine DeSoi, RN, and Dylan Farnsworth, PhD, "We're asking Congress to pass a full year NIH budget so research doesn't stall. Every delay in funding is a delay in future treatments for myotonic dystrophy."
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...
Support MDF for #GivingTuesday!
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
Use MDF's Employment Access Toolkit for tips on navigating work & DM: www.myotonic.org/sites/defaul...
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...
