Myotonic Dystrophy Foundation
@myotonicstrong.bsky.social
The world's largest patient organization focused solely on #myotonicDystrophy. Our mission is Community, Care, and a Cure.
www.myotonic.org
www.myotonic.org
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...
November 8, 2025 at 12:15 AM
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
November 3, 2025 at 10:00 PM
👉 🔬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...
October 30, 2025 at 3:08 PM
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
🔗 www.myotonic.org/pat125-auction
October 22, 2025 at 12:26 AM
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
🔗 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.
October 20, 2025 at 11:04 PM
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...
October 10, 2025 at 9:10 PM
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
October 2, 2025 at 8:18 PM
👉 🔬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
✉️ 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
Meet John & Karen, the first recipients of our Community Connections program 💚👇https://www.myotonic.org/community-connections
September 16, 2025 at 5:22 PM
✉️ 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
Meet John & Karen, the first recipients of our Community Connections program 💚👇https://www.myotonic.org/community-connections
¡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...
#myotonicDystrophy
👉 www.myotonic.org/sites/defaul...
September 16, 2025 at 5:54 AM
¡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...
#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...
👉 www.myotonic.org/sites/defaul...
September 16, 2025 at 5:39 AM
¡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...
👉 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! 💪✨
September 16, 2025 at 12:07 AM
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! 💪✨
🌍 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...
September 15, 2025 at 4:00 AM
🌍 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...
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...
September 10, 2025 at 5:25 PM
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...
September 10, 2025 at 5:25 PM
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...
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...
September 8, 2025 at 4:16 PM
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...
September 8, 2025 at 4:16 PM
#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...
September 8, 2025 at 4:15 PM
#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...
September 5, 2025 at 8:00 PM
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...
September 4, 2025 at 7:17 PM
💬 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...
September 4, 2025 at 7:08 PM
💬 “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...
September 3, 2025 at 1:01 PM
#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 2, 2025 at 3:27 PM
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...
September 2, 2025 at 3:26 PM
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...
August 28, 2025 at 9:07 PM
💬 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...
August 28, 2025 at 9:06 PM
💚🏍️ 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...