🌍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: https://lnkd.in/gS2iCTB
Myotonic Dystrophy Foundation
Non-profit Organizations
Oakland, California 1,697 followers
The world's largest patient organization focused solely on myotonic dystrophy. Our mission is Community, Care, & a Cure.
About us
We envision a world with treatments and a cure for myotonic dystrophy (DM). Our mission is Community, Care, and a Cure. We created the Myotonic Dystrophy Foundation (MDF) to enhance the quality of life of people living with myotonic dystrophy (DM) and to drive research focused on treatments and a cure. DM is an inherited disorder that can appear at any age and manifests differently in every person. MDF is the leading global advocate helping patients and families navigate the DM disease process, and is often the first resource contacted by newly-diagnosed patients, their families, their social workers and their physicians around the world. For many international patients, MDF is often the only resources and support they are able to locate. Currently tens of thousands of people living with myotonic dystrophy, their families & friends make up the MDF community. Based in Oakland, California, MDF partners with, and complements the work of, the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and other governmental, academic, and philanthropic agencies.
- Website
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https://www.myotonic.org/
External link for Myotonic Dystrophy Foundation
- Industry
- Non-profit Organizations
- Company size
- 2-10 employees
- Headquarters
- Oakland, California
- Type
- Nonprofit
- Founded
- 2007
- Specialties
- Grants, Support Groups, Patient Advocacy, Education, Medical Education, Myotonic Dystrophy, and Research Grants
Locations
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Primary
Get directions
663 13th St
Suite 100
Oakland, California 94612, US
Employees at Myotonic Dystrophy Foundation
Updates
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Myotonic Dystrophy Foundation reposted this
📢 Registration is now open for the 15th International Myotonic Dystrophy Consortium Meeting (IDMC-15)! On this International Myotonic Dystrophy Awareness Day, we are pleased to extend an invitation to all stakeholders in the field of myotonic dystrophy — including researchers, students, clinicians, patients, patient partners, representatives of patient associations, and members of the pharmaceutical industry — to register and actively participate in this important event. Discover the complete scientific program, register for the event and its various activities, and submit your abstract. You will also find practical information to help plan your stay, including details on accommodation, transportation, and dining options. All submitted abstracts will be subject to peer review, and selected contributions will be featured in the official program. To stay informed, we encourage you to subscribe to our mailing list at www.idmc-15.org and visit our website regularly for the latest updates. Join us in advancing the dialogue on the future of care and services in DM — we look forward to your valued contributions and participation at IDMC-15. 🌍✨ Photo credit for the night view of the city of Saguenay : Laurent Silvani #idmc15 #idmcsaguenay2026 #idmc2026 #myotonicdystrophy Myotonic Dystrophy Foundation
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👉 🔬Join MDF's Meet the DM Drug Developer with Sanofi on October 3rd 🧬 for an update on their DM program! 📝 Register to attend & get early access to the recording! 💻
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Myotonic Dystrophy Foundation reposted this
A few weeks ago, Reitler attorneys Lauren Friend McKelvey and Anisha Mirchandani along with several of our clients had the privilege of attending the 2025 Myotonic Dystrophy Foundation Gala at the beautiful Tribeca Rooftop. From the inspiring program to the energy in the room, it was moving to see so many people rally around MDF’s mission to improve the lives of individuals and families affected by myotonic dystrophy. At Reitler, we are proud to support organizations driving meaningful impact and grateful for the opportunity to give back alongside our clients. Congratulations to MDF on a successful evening and thank you for letting us be a part of it.
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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!
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Myotonic Dystrophy Foundation reposted this
⭐ Tomorrow is the 2025 MDF Gala in New York! We are proud to be a sponsor of this important event organized by the Myotonic Dystrophy Foundation, whose tireless work supports patients, accelerates research, and drives advocacy forward. We’re honored to stand alongside this community in raising awareness and solutions for those living with Myotonic Dystrophy. If you’d like to support the cause, you can donate here ⬇️ 🔗 https://lnkd.in/eMChc6Au #MDFGala #MyotonicDystrophyAwareness #RareDisease #UniteForDM2 #GrittGene
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Myotonic Dystrophy Foundation reposted this
Vandaag kleurt groen voor Myotone Dystrofie Awareness Day! 💚 Het Radboudumc en Maastricht UMC+ werken samen aan de beste zorg en het nieuwste onderzoek binnen het expertisecentrum myotone dystrofie. Vandaag vragen we samen aandacht voor iedereen die leeft met deze ziekte. Myotone dystrofie is een zeldzame erfelijke spierziekte die spieren verzwakt en ontspanning van de spieren vertraagt. Dat heeft gevolgen voor het hele lichaam en kan levensbedreigend zijn. Omdat de ziekte vaak niet direct wordt herkend, is bewustwording extra belangrijk. Op dit moment is er nog geen behandeling om de ziekte te vertragen of genezen, maar onderzoekers proberen de ziekte beter te begrijpen en nieuwe behandelingen te vinden. Zo doen we mee aan de eerste internationale studies naar nieuwe medicijnen. Die medicijnen pakken mogelijk de oorzaak van myotone dystrofie aan, door het proces dat schadelijke eiwitten in de spieren veroorzaakt te stoppen of te vertragen. Meer weten? https://lnkd.in/e2myZuXr Kempenhaeghe | Maastricht UMC+
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Myotonic Dystrophy Foundation reposted this
Research Scientist | Translational Drug Discovery | Natural Product Pharmacology | RNA Biology & Therapeutics
Tonight Albany landmarks lit up green for International Myotonic Dystrophy Awareness Day. Myotonic Dystrophy is the most common form of muscular dystrophy in adults, yet many have never heard of it. Awareness is more than a gesture—it fuels research, support, and hope for those living with this rare disease. Seeing our city and university glowing green is a reminder: rare doesn’t mean invisible. The more we shine a light, the closer we get to change. #MyotonicDystrophy #RareDiseaseAwareness #Albany #UAlbany
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Myotonic Dystrophy Foundation reposted this
Journée mondiale de la sensibilisation à la dystrophie myotonique En ce 15 septembre, Journée mondiale de la sensibilisation à la dystrophie myotonique, nous aimerions partager avec vous notre fierté devant l’expertise développée en dystrophie myotonique au Saguenay—Lac-Saint-Jean, expertise reconnue internationalement. L’équipe du GRIMN, en collaboration avec le CIUSSS du Saguenay-Lac-Saint-Jean et Ville de Saguenay, aura l’honneur de recevoir en mai 2026 la 5e édition de IDMC-15 - International Myotonic Dystrophy Consortium Meeting. Ce congrès, qui accueille les plus grands noms de la recherche en dystrophie myotonique, est le plus important rassemblement du genre au monde. Ce n’est donc pas un hasard si nous choisissons la journée mondiale de la sensibilisation à la dystrophie myotonique pour ouvrir officiellement les inscriptions à ce congrès: https://lnkd.in/dDwtiChs Nous profitons également de cette journée de sensibilisation pour vous partager que les chercheuses Elise Duchesne et Cynthia Gagnon ont d’ailleurs été appelées à partager leur expertise ce samedi 13 septembre dans le cadre d’une visio conférence soulignant la Journée Nationale des Familles Steinert organisée par L’Association française contre les myopathies (AFM-Téléthon). Elles ont animé une session portant sur « L’importance de bouger » pour les personnes vivant avec la dystrophie myotonique.
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Myotonic Dystrophy Foundation reposted this
With this new #funding, we are well positioned to further support the clinical development of our lead program ATX-01 for #DM1, a unique therapy currently in Phase I-IIa targeting miR23b. We will also advance a broader pipeline of targeted RNA medicines beyond the muscle - into muscular, CNS, and cardiac conditions. Read more here: https://lnkd.in/gZS8SHJg #BiotechInvestment #LifeSciences #RNA
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