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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 03/10/2026

Dyne Therapeutics shared new one-year ACHIEVE trial data for z-basivarsen (DYNE-101) in #myotonicDystrophy type 1 (DM1), reporting improvements in function, strength, myotonia, and participant-reported symptoms. Read Dyne’s letter to the DM community at: www.dyne-tx.com/new-one-year...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 03/10/2026

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 25/09/2026

Do you know how to recognize a potentially predatory #myotonicDystrophy research opportunity? Many opportunities are legitimate, but not all offer the same protections for your privacy, rights, and personal information. Learn more at: myotonic.org/predatory-re...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 25/09/2026

For International #MyotonicDystrophy Awareness Day, the Zabezhinsky family helped shine a bright light on DM! 💚 Thanks to their efforts, Target Field and downtown Minneapolis glowed green, while DM was spotlit on live TV! www.myotonic.org/internationa...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 24/09/2026

👉 🔬Join MDF's Meet the #MyotonicDystrophy Drug Developer with Dyne Therapeutics on October 23rd 🧬 for an update on their DM program! 📝 Register to attend & get early access to the recording! 💻https://www.myotonic.org/meet-dm-drug-developers

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Reposted by Myotonic Dystrophy Foundation

Institut de Myologie @institutdemyologie.bsky.social · 17/09/2026

💚 #MyotonycDystrophyAwarenessDay #GoGreenForDM The chapel at the heart of @pitiesalpetriere.bsky.social was lightened in green for a special evening thanks to REDs team from @crm-myologie.bsky.social to raise awareness on #MyotonicDystrophy @afm-telethon.bsky.social @myotonicstrong.bsky.social

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 21/09/2026

Dyne Therapeutics has shared a message to the #myotonicDystrophy community reaffirming its commitment to DM1 research and to advancing z-basivarsen (DYNE-101), an investigational therapy currently being evaluated in two ongoing global clinical trials: www.dyne-tx.com/message-to-t...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 18/09/2026

City St. George's University of London researchers and clinicians went #GreenForDM in honor of International #myotonicDystrophy Awareness Day and hosted an educational event about DM alongside the Myotonic Dystrophy Support Group UK! www.myotonic.org/internationa...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 17/09/2026

Brookville, Indiana, put International #MyotonicDystrophy Awareness Day on the map! Thank you to Jessica Ison, along with family and friends for spreading awareness! myotonic.org/events/inter...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 16/09/2026

Registration is now open for the 2027 MDF Conference in Seattle! Join the #MyotonicDystrophy community April 28-May 2 for research updates, education, connection, wellness, and more. Explore the Community and Professional Tracks and register today: myotonic.org/events/2027-...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 16/09/2026

Today the Boston City Hall is glowing green for International #MyotonicDystrophy Awareness Day! Thank you to MDF Support Group Facilitator, Jim Dolan, and friends for spreading awareness! www.myotonic.org/internationa...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 15/09/2026

Today the CN Tower in Toronto lights up green again and so will the Burrard Bridge for the first time! Thank you to MDF Support Group Facilitator, Julie LeBoeuf, for making sure these landmarks mark International Myotonic Dystrophy Awareness Day! www.myotonic.org/internationa...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 15/09/2026

New proclamation in Massachusetts for International #MyotonicDystrophy Awareness Day! 🎉💚 Thank you to MDF Support Group Facilitator Jim Dolan for making it happen! 🏛️👏 Learn more about Jim's journey to make this happen: www.einpresswire.com/article/9425...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 15/09/2026

The University of Rochester's research team, including MDF grant recipient, Dr. Johanna Hamel, is going #GreenForDM!💚 📢 Join in the awareness for International #MyotonicDystrophy Awareness Day! Wear green and tag us in your photos! www.myotonic.org/internationa...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 15/09/2026

New proclamation for town of Amherst to recognize International #MyotonicDystrophy Awareness Day! 💚 Congratulations to Jane Mairs for making it happen! Thank you to Amherst Town Council President, Mandi Jo Hanneke, and Ana Devlin Gauthier, for supporting this initiative! 🏛️👏

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 15/09/2026

🌍 #GoGreenForDM this year! 📢 Shoutout MDF Board Member, Belen for sporting green during her travels. Join us in raising awareness for the 6th annual International #MyotonicDystrophy Awareness Day! Wear green and tag us in your photos! myotonic.org/events/inter...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 15/09/2026

🌍 📢 Shoutout to our MDF Canadian Support Group and their facilitators for joining us in going #GreenForDM this year to raise awareness for International #MyotonicDystrophy Awareness Day! Join them by wearing green and tagging us on social media today! www.myotonic.org/internationa...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 15/09/2026

🌍 Today is the 6th annual International #MyotonicDystrophy Awareness Day! 📢Shoutout to all our MDF support groups and their facilitators for joining us in going #GreenForDM this year to raise awareness! Join them by wearing green and tagging us on social media today! www.myotonic.org/internationa...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 15/09/2026

Go #GreenForDM! Raising #myotonicDystrophy awareness can be 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! 💪✨Learn more at: www.myotonic.org/internationa...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 15/09/2026

🔬🧬Over 40 leading biopharmaceutical companies & institutions are racing to develop promising research which may lead to the first FDA approved treatments and a cure for #myotonicDystrophy. 💚🔗Support DM research & drug development, raise awareness on Sept 15: www.myotonic.org/internationa...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 15/09/2026

Today, more than 60 organizations worldwide unite for the sixth annual International #MyotonicDystrophyAwareness Day to strengthen registries, advance research, and improve access to care for people living with #myotonicDystrophy. Learn more at myotonic.org/global-allia...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 15/09/2026

The global #myotonicDystrophy patient advocacy community is asking Novartis to complete its analysis of the HARBOR data, explore the secondary and exploratory findings, and not abandon DM. Read the open letter at myotonic.org/an-open-lett...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 14/09/2026

New proclamation in Gainesville, FL for International #MyotonicDystrophy Awareness Day! 🎉 MDF Support Group Facilitators Beth, David, and Belen, alongside friends, & researchers from UF made it happen! 🏛️💚 Learn how YOU can request a local proclamation at: myotonic.org/wp-content/u...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 14/09/2026

Due to the varied and complex symptoms of #myotonicDystrophy, people living with DM need a coordinated system of care! 🌐 Support better access to care and awareness in healthcare professionals by spreading awareness on Sept 15! 💚🔗Learn more at: www.myotonic.org/internationa...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 13/09/2026

As the most variable of all known genetic conditions, #MyotonicDystrophy looks different for everyone! 🔬🧬Help improve access to care and advance research for treatments by supporting #myotonicDystrophy Awareness on September 15th! 💚🔗Learn more at: www.myotonic.org/internationa...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 12/09/2026

Clinical education is critical to help doctors recognize #myotonicDystrophy. 🩺 Early diagnosis and care can save lives! Improve DM medical education by supporting#myotonicDystrophy Awareness on Sept 15th! 💚🔗Learn more at: www.myotonic.org/internationa...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 11/09/2026

Lack of familiarity by healthcare professionals can allow #myotonicDystrophy to be misdiagnosed for decades. 🧑‍⚕️🩺People living with DM need access to testing and counseling to receive appropriate healthcare. 💚🔗Learn more at: www.myotonic.org/internationa...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 10/09/2026

🎉 Congratulations to Dr. Araya Puwanant at Wake Forest University School of Medicine on receiving a $3 million NIH/NINDS research grant!💚 We’re excited to see her brain structure, clinical endpoints, and biomarkers in #MyotonicDystrophy Type 2, move forward! 🧠🩺🧬

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 10/09/2026

🎉 Congratulations to Dr. Marwa Zafarullah, on being a 2026 40 Under 40 honoree! She is advancing brain-related disease research in #myotonicDystrophy that may help accelerate therapeutic development. 🧠https://www.bizjournals.com/sanjose/news/2026/06/11/40-under-40-2026-honorees.html

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 10/09/2026

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...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 09/09/2026

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...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 08/09/2026

Novartis announced that the Phase 3 HARBOR trial of del-desiran for myotonic dystrophy type 1 did not meet its primary endpoint. MDF stands with our community as clinical trials continue to progress. Read MDF's statement: myotonic.org/myotonic-dys...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 08/09/2026

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...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 07/09/2026

#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...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 06/09/2026

#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...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 05/09/2026

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...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 04/09/2026

Despite the availability of simple genetic tests for #myotonicDystrophy, they are underutilized & rarely covered by insurance. People living with DM need access to testing & counseling to get appropriate care. 🩺💚Spread awareness on Sept 15! 🔗Learn more at: www.myotonic.org/internationa...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 03/09/2026

#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...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 02/09/2026

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...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 01/09/2026

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...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 24/08/2026

✉️ Support the DM community—one letter at a time. Send a kind note, drawing, or story to Colin and Patrick through MDF's Community Connections! 💚👇Get started at: www.myotonic.org/community-co...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 24/08/2026

📣MDF #myotonicDystophy grants aim to accelerate efforts toward effective treatments & a cure. 🧬🔬Open to for-profit and non-profit institutions around the world.🌐💚🔗Share to your network & apply now: www.myotonic.org/myotonic-dys...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 12/08/2026

🏔️ Taking awareness to new heights! 💚 MDF Director of Programs Mindy Buchanan reached the summit of Carrauntoohil, Ireland’s highest mountain, in honor of #MyotonicDystrophy In Motion Month! 🎉 Learn more about In Motion month at: www.myotonic.org/in-motion

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 11/08/2026

🏕️ Camp JOA is underway! ☀️ Campers living with juvenile-onset #MyotonicDystrophy are making memories with friends, trying new activities, and enjoying plenty of summer fun in Iowa! 💚 Explore upcoming programs & activities for the DM community on our events calendar: www.myotonic.org/calendar/month

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 11/08/2026

Our 2025 Annual Report is here! 💚📘 Together, the #myotonicDystrophy community continued to turn determination into progress. Check out how you've helped advance research, strengthen advocacy and raise awareness. Explore the highlights and impact in our full report at: myotonic.org/wp-content/u...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 10/08/2026

✨Save the Date! ✨ 🗓️Join us April 28th - May 2nd in #Seattle for the 2027 MDF Conference! Often called the #MyotonicDystrophy family reunion, registration for this educational and hope filled event will open on September 15th! 💚🧬🔗Learn more about MDF's 2027 Conference: myotonic.org/events/2027-...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 06/08/2026

Meet 2026 MDF Fellow Hossameldin Ali, PhD, MSc! 🧬🧑‍🔬✨ Dr. Ali is a University of Glasgow postdoctoral fellow using computational biology to study CTG repeat expansion & population-level transmission risk in #myotonicDystrophy type 1 (#DM1). Learn more: myotonic.org/2026-fellow-...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 03/08/2026

Have questions about disability protections and #myotonicDystrophy?💚 Join our Ask the Expert webinar with Disability Justice Advocate, Marisa Spain, to learn about self-advocacy strategies and work accommodations. 💬🔗Register at: events.zoom.us/ev/Ahsp1Eq1i...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 30/07/2026

Keep the movement going all year long. 💚 When you become a monthly donor, your gift helps MDF fund research and support families at every stage of #myotonicDystrophy. Learn more: give.myotonic.org/campaign/622...

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Myotonic Dystrophy Foundation @myotonicstrong.bsky.social · 30/07/2026

Happy International #FriendshipDay! 💚Today, we’re honoring the connections that bring light and strength to the #MyotonicDystrophy community. Here’s to the people who stand beside us, every step of the way.

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