{"id":12685,"date":"2024-09-15T01:28:00","date_gmt":"2024-09-15T08:28:00","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?p=12685"},"modified":"2025-12-31T01:29:07","modified_gmt":"2025-12-31T09:29:07","slug":"global-alliance-60-myotonic-dystrophy-organisations-celebrate-fourth-annual-international-myotonic","status":"publish","type":"post","link":"https:\/\/myotonic.org\/de\/global-alliance-60-myotonic-dystrophy-organisations-celebrate-fourth-annual-international-myotonic\/","title":{"rendered":"Global Alliance of 60+ Myotonic Dystrophy Organisations Celebrate the Fourth Annual International Myotonic Dystrophy Awareness Day"},"content":{"rendered":"
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Click here to download this press release as a printable PDF.<\/a><\/p>\n

PRESS RELEASE<\/strong><\/p>\n

Australia Contact Name: Catherine Stace
\nAustralia Contact Email:\u00a0info@mda.org.au<\/a><\/p>\n

Japan Contact Name: Midori Senoo
\nJapan Contact Email:\u00a0international@dm-family.net<\/a><\/p>\n

UK Contact Name: Michael Walker
\nUK Contact Email:\u00a0contact@mdsguk.org<\/a><\/p>\n

US Contact Name: Tanya Stevenson
\nUS Contact Email:\u00a0Tanya.Stevenson@myotonic.org<\/a><\/p>\n

FOR IMMEDIATE RELEASE<\/u><\/strong><\/p>\n<\/div>\n

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Global Alliance of 60+ Myotonic Dystrophy Organisations Celebrate the Fourth Annual International Myotonic Dystrophy Awareness Day<\/h2>\n

15 September 2024, Worldwide:<\/u>\u00a0On the 15th of September 2024, the\u00a0Global Alliance for Myotonic Dystrophy Awareness<\/a>\u00a0unites over 60+ organisations from around the globe to mark the fourth annual International Myotonic Dystrophy Awareness Day. This day is dedicated to raising awareness about myotonic dystrophy (DM), a complex and often misunderstood genetic disease that a\ufb00ects thousands of individuals and families worldwide.<\/p>\n

This Awareness Day, the Global Alliance for Myotonic Dystrophy Awareness invites individuals, organisations, and policymakers around the world to raise awareness of myotonic dystrophy. To contribute to local e\ufb00orts, you may consider donating to one of the 60+ members of the Global Alliance from over 16 countries across 4 continents at:\u00a0www.myotonic.org\/international-dm-day<\/a><\/p>\n

Myotonic dystrophy is a progressive, inherited\u00a0disease<\/a>\u00a0that a\ufb00ects muscle strength, respiratory systems, heart function, cognitive abilities, and more. Because the disease is so complex, myotonic dystrophy is often misdiagnosed and poorly supported. By uniting e\ufb00orts to raise awareness, the Global Alliance seeks to shed light on the challenges faced by those living with myotonic dystrophy and to enhance understanding of the disease worldwide.<\/p>\n

Michael Walker, the Chair of the Board of Trustees of the\u00a0Myotonic Dystrophy Support Group based in the UK<\/a>, who has dedicated over 20 years to the cause, emphasises the importance of this day, „Every year, International Myotonic Dystrophy Awareness Day provides us with a powerful platform to amplify the voices of those living with myotonic dystrophy. It is a chance to educate the health professionals, especially those in Primary Care, the local Members of Parliament, and the public, about the urgent need for better care, research, support, and understanding of the condition. Our collective e\ufb00orts are vital in improving the lives of individuals and their families a\ufb00ected by this challenging condition.\u201d<\/p>\n

With no current cure or disease-modifying treatments available, raising awareness and fostering research are crucial steps toward improving the lives of those impacted by this condition.<\/p>\n

„As someone who sees the impact of myotonic dystrophy both in the research lab and in the lives of a\ufb00ected individuals, I am deeply committed to advancing our understanding of this disease,\u201d said myotonic dystrophy doctoral researcher Juan Arboleda, President of the\u00a0NeuroGenetics Student Organization at the University of Florida<\/a>. \u201cInternational Myotonic Dystrophy Awareness Day is a reminder that the scientific community must continue to push for breakthroughs in treatment and care, while also fostering hope for those living with DM.“<\/p>\n

The Global Alliance for Myotonic Dystrophy Awareness recognises the importance of uniting under a common goal of therapies and ultimately, a cure. Catherine Stace, CEO of\u00a0Muscular Dystrophy Australia<\/a>, highlights the global reach of the Alliance, „In Australia and beyond, we are united in our mission to bring myotonic dystrophy out of the shadows. By working together with our global partners, we are not only raising awareness but also driving meaningful change in how this condition is perceived and managed. The strength of our community lies in our ability to support one another and advocate for a future where no one has to face myotonic dystrophy alone.“<\/p>\n

The Global Alliance for Myotonic Dystrophy Awareness invites everyone\u2014individuals, families, healthcare professionals, companies, hospitals\/clinics,research labs and advocates\u2014to participate in this year\u2019s International Myotonic Dystrophy Awareness Day on the 15th of September. Through your participation, you will shed light on the challenges faced by those with DM and promote a greater understanding of the disease.<\/p>\n

Together, we can change the future of myotonic dystrophy.<\/strong><\/p>\n

###<\/p>\n

Established in 2021, the Global Alliance for Myotonic Dystrophy Awareness now includes over 60 international nonprofit organisations, academic and research institutions, biotechnology and pharmaceutical companies, patient advocacy groups, and others working together to raise myotonic dystrophy awareness. Discover myotonic dystrophy resources and learn how you can join the movement at:\u00a0www.myotonic.org\/international-dm-day<\/a><\/p>\n

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The Global Alliance for Myotonic Dystrophy Awareness<\/h2>\n

To learn more and apply to join the Global Alliance, please visit\u00a0www.myotonic.org\/intereational-dm-day<\/a><\/p>\n

Members listed alphabetically by country. An * indicates a founding member of the Global Alliance for Myotonic Dystrophy Awareness.<\/p>\n

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Alg\u00e9ria<\/strong>\u00a0–\u00a0Association Shifa of Neuromuscular Diseases (ASMNM)<\/a><\/p>\n<\/div>\n

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Australia<\/strong>\u00a0–\u00a0MDA Australia<\/a>*<\/p>\n<\/div>\n

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Belgium<\/strong>\u00a0–\u00a0Association Belge contre les Maladies neuro-Musculaires<\/a>*<\/p>\n<\/div>\n

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Canada<\/strong>\u00a0–\u00a0The Neuromuscular Disease Network for Canada<\/a>*<\/p>\n<\/div>\n

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Canada<\/strong>\u00a0–\u00a0Muscular Dystrophy Canada<\/a><\/p>\n<\/div>\n

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Denmark<\/strong>\u00a0–\u00a0Muskelsvindfonden<\/a>*<\/p>\n<\/div>\n

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Europe<\/strong>\u00a0–\u00a0Euro-DyMA<\/a>*<\/p>\n<\/div>\n

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France<\/strong>\u00a0–\u00a0AFM-T\u00e9l\u00e9thon<\/a>*<\/p>\n<\/div>\n

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Germany<\/strong>\u00a0–\u00a0Deutschen Gesellschaft f\u00fcr Muskelkranke e.V.<\/a>*<\/p>\n<\/div>\n

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Greece<\/strong>\u00a0–\u00a0Muscular Dystrophy Association HELLAS<\/a>*<\/p>\n<\/div>\n

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Italy<\/strong>\u00a0–\u00a0Centro Clinico NeMO<\/a><\/p>\n<\/div>\n

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Italy<\/strong>\u00a0–\u00a0FMM – Fondazione Malattie Miotoniche<\/a>*<\/p>\n<\/div>\n

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Japan<\/strong>\u00a0–\u00a0Myotonic Dystrophy Patients‘ Group of Japan<\/a>*<\/p>\n<\/div>\n

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Netherlands<\/strong>\u00a0–\u00a0Stichting MD (Nederland)<\/a>*<\/p>\n<\/div>\n

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Netherlands<\/strong>\u00a0–\u00a0Spierziekten Nederland<\/a>*<\/p>\n<\/div>\n

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New Zealand<\/strong>\u00a0–\u00a0Centre for Brain Research, Neurogenetic Clinic, University of Auckland<\/a><\/p>\n<\/div>\n

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Serbia<\/strong>\u00a0–\u00a0University of Belgrade – Faculty of Biology, Center for Human Molecular Genetics<\/a><\/p>\n<\/div>\n

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Spain<\/strong>\u00a0–\u00a0Arthex Biotech<\/a><\/p>\n<\/div>\n

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Spain<\/strong>\u00a0–\u00a0CIBER<\/a><\/p>\n<\/div>\n

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Spain<\/strong>\u00a0–\u00a0INCLIVA. Health Research Institute<\/a><\/p>\n<\/div>\n

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Spain<\/strong>\u00a0–\u00a0Universitat de Val\u00e8ncia<\/a><\/p>\n<\/div>\n

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Switzerland<\/strong>\u00a0–\u00a0ASRIMM (Association Suisse Romande Intervenant contre les Maladies neuro-Musculaires)<\/a>*<\/p>\n<\/div>\n

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Switzerland<\/strong>\u00a0–\u00a0Lupin Neurosciences<\/a><\/p>\n<\/div>\n

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United Kingdom<\/strong>\u00a0–\u00a0AMO Pharma Ltd<\/a><\/p>\n<\/div>\n

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United Kingdom<\/strong>\u00a0–\u00a0Cure DM Myotonic Dystrophy UK<\/a>*<\/p>\n<\/div>\n

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United Kingdom<\/strong>\u00a0–\u00a0Myotonic Dystrophy Support Group<\/a>*<\/p>\n<\/div>\n

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United Kingdom<\/strong>\u00a0–\u00a0Muscular Dystrophy UK<\/a>*<\/p>\n<\/div>\n

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United Kingdom<\/strong>\u00a0–\u00a0St George’s University Hospitals NHS Foundation Trust<\/a><\/p>\n<\/div>\n

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United Kingdom<\/strong>\u00a0–\u00a0TREAT-NMD<\/a><\/p>\n<\/div>\n

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United Kingdom<\/strong>\u00a0–\u00a0UK Myotonic Dystrophy Patient Registry<\/a>*<\/p>\n<\/div>\n

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United Kingdom<\/strong>\u00a0–\u00a0University College London Hospitals NHS Foundation Trust<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0AskBio<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0Astellas Gene Therapies<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0Athens Academy<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0Avidity Biosciences<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0Dyne Therapeutics<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0Entrada Therapeutics<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0Expansion Therapeutics<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0GrittGene Therapeutics<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0Harmony Biosciences<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0Houston Methodist Department of Neurology<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0Juvena Therapeutics, Inc.<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0Kansas State University Wildcat Extension<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0Indiana University School of Medicine, Dept of Neurology<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0The Jackson Laboratory (JAX)<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0Muscular Dystrophy Association USA<\/a>*<\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0Myotonic Dystrophy Foundation<\/a>*<\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0Myotonic Dystrophy Family Registry<\/a>*<\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0National Registry for Myotonic Dystrophy (DM) & Facioscapulohumeral Dystrophy (FSHD)\u00a0<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0Paul D. Wellstone Muscular Dystrophy Cooperative Research Center<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0PepGen<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0Stanford University<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0University of Florida Center for Neurogenetics<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0NeuroGenetics Student Organization at the University of Florida<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0The RNA Institute, University at Albany, SUNY\u00a0<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0University of Iowa Health Care\u00a0<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0University of Utah<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0Vertex Pharmaceuticals<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0Virginia Commonwealth University<\/a><\/p>\n<\/div>\n

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USA<\/strong>\u00a0–\u00a0Wake Forest University, Department of Neurology<\/a><\/p>\n<\/div>\n

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Worldwide<\/strong>\u00a0–\u00a0International Myotonic Dystrophy Consortium<\/a>*<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

Click here to download this press release as a printable PDF. PRESS RELEASE Australia Contact Name: Catherine Stace Australia Contact Email:\u00a0info@mda.org.au Japan Contact Name: Midori Senoo Japan Contact Email:\u00a0international@dm-family.net UK Contact Name: Michael Walker UK Contact Email:\u00a0contact@mdsguk.org US Contact Name: Tanya Stevenson US Contact Email:\u00a0Tanya.Stevenson@myotonic.org FOR IMMEDIATE RELEASE Global Alliance of 60+ Myotonic Dystrophy Organisations […]<\/p>\n","protected":false},"author":9,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[70],"tags":[],"class_list":["post-12685","post","type-post","status-publish","format-standard","hentry","category-news"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/posts\/12685","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/users\/9"}],"replies":[{"embeddable":true,"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/comments?post=12685"}],"version-history":[{"count":0,"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/posts\/12685\/revisions"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/media?parent=12685"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/categories?post=12685"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/tags?post=12685"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}