{"id":13357,"date":"2022-07-23T10:31:32","date_gmt":"2022-07-23T17:31:32","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?p=13357"},"modified":"2026-01-01T10:32:23","modified_gmt":"2026-01-01T18:32:23","slug":"global-alliance-dm-awareness-announces-areas-focus-2022","status":"publish","type":"post","link":"https:\/\/myotonic.org\/fr\/global-alliance-dm-awareness-announces-areas-focus-2022\/","title":{"rendered":"Global Alliance for DM Awareness Announces Areas of Focus for 2022"},"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

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

UK Contact Name: Emma-Jayne Ashley
\nUK Contact Email:\u00a0CureDM@outlook.com<\/a><\/p>\n

Japan Contact Name: Midori Senoo
\nJapan Contact Email:\u00a0Contact@dm-family.net<\/a><\/p>\n<\/div>\n

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

International Myotonic Dystrophy Awareness Day 2022<\/h2>\n

July 23, 2022, Worldwide:<\/u>\u00a0A global alliance of over 50 myotonic dystrophy-focused organizations have, once again, united to celebrate\u00a0Myotonic Dystrophy Families Day<\/strong>\u00a0on July 23rd, and\u00a0International Myotonic Dystrophy Awareness Day<\/strong>\u00a0on September 15th.<\/p>\n

To improve the quality of life of people living with the disease, it is critical to raise awareness about myotonic dystrophy (DM). This rare, multi-systemic, progressive, and inherited disease affects successive generations but is often misdiagnosed and poorly supported.\u00a0As many as 1 in 2,100 individuals are at risk of developing the disease or passing it on to the next generation<\/a>, making myotonic dystrophy the most common form of adult muscular dystrophy. DM is also considered to be one of the most complex and variable of all known conditions, yet there are currently no disease modifying treatments or cures.<\/p>\n

After a successful launch of the first\u00a0International Myotonic Dystrophy Awareness Day<\/a>\u00a0in 2021, which engaged multiple policy makers and elected officials from all levels of government, the benefits of the campaign are already bearing fruit:<\/p>\n

\u201cIn 2021, the efforts of over 50 organizations in the Global Alliance for Myotonic Dystrophy Awareness showed an unprecedented level of collaboration, collective energy, and progress in raising myotonic dystrophy awareness to change the future of the disease,\u201d said Dr. Tanya Stevenson, CEO of the U.S. based\u00a0Myotonic Dystrophy Foundation<\/a>. \u201cWe saw three government proclamations acknowledging September 15th at the federal and regional levels in the U.S. and Canada, thousands of social media posts across languages and countries, iconic monuments lit up in green, virtual educational seminars and celebratory programs, a logo contest with participation from over 20 countries, and so much more. We are in awe of the work the Global Alliance has already accomplished, and urge all of our partners to build on these early successes to continue to raise the profile of myotonic dystrophy, and to grow the attention of drug developers, clinical care teams, insurance companies, and government agencies so the devastating generational impact of this disease may receive recognition and families receive the resources they need and deserve.\u201d<\/p>\n

In addition to the Alliance\u2019s core mission of raising myotonic dystrophy awareness among the general population, many members of the Global Alliance for Myotonic Dystrophy Awareness are also leading efforts in two specific areas of focus to maximize our impact in 2022:<\/p>\n

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  1. Awareness and education among clinical care teams,<\/li>\n
  2. Clinical trial readiness for participants.<\/li>\n<\/ol>\n

    Myotonic dystrophy awareness and education among clinicians is crucial to delivering the quality of health care that people living with DM require. Myotonic dystrophy is often overlooked due to the variability of the condition and the symptoms overlapping with other diseases. Although it is now confirmable with a simple genetic test, a diagnosis can still be difficult even when DM is suspected. It is common for older family members to only be diagnosed after the birth of a congenitally affected child, which means misdiagnoses can persist for decades. Physicians may see only one or two patients with DM in their entire practice and therefore may be unfamiliar with DM\u2019s varied and complex symptoms that can appear in nearly every system of the body, from locking muscles (myotonia), to heart, breathing, digestive, hormonal, early onset cataracts, and\/or cognitive difficulties, just to name a few.<\/p>\n

    \u201cMyotonic Dystrophy is a rare and widely variable disease, yet perhaps not as rare as believed, just not identified. Individuals and families living with DM often unfairly bear the burden of educating their clinical care teams about the disease, and the realities of living with it.\u201d said Emma-Jayne Ashley, Founding Trustee of\u00a0Cure DM UK<\/a>. \u201cEven as self-advocates, it can be difficult to receive appropriate care and support, and it can take many years to receive a diagnosis in the first place. It is absolutely critical that we increase the level of awareness and education about DM amongst clinicians around the world, and in the meantime, provide families and individuals with the very best resources to be self-advocates. As a Global Alliance, we have a unique opportunity to share knowledge and resources, to improve and standardise care and quality of life for our DM community, worldwide.\u201d<\/p>\n

    Clinical trial readiness for people living with myotonic dystrophy is fundamental to the development of therapies and a cure. This is an exciting time for the DM community with multi-national recruitment for three clinical trials, including one for the congenital form of the disease, and significant new investment into research and technologies focused on identifying treatments. With over\u00a050 companies publicly focused on myotonic dystrophy<\/a>, the field is constantly learning and there is hope for improved quality of life, reduced disability, and increased life expectancy for individuals living with this disease within the next few years. These new technologies also hold great promise for individuals with other muscular dystrophies and for conditions with a similar genetic base, such as ALS, Fragile X syndrome and Huntington\u2019s disease. But there is more work to be done!<\/p>\n

    \u201cWith the opportunities for participating in DM research and drug trials continuing to grow, it is now more important than ever that we as a patient community engage in these studies and trials,\u201d reflected Midori Senoo, Managing Director of the\u00a0Myotonic Dystrophy Patients’ Group of Japan (DM-family)<\/a>. \u201cIndividuals living with DM must understand why participation is so important. Because only patients can prove the efficacy of the drug. What only patients can do is advance the world by participating in research. Our organizations can contribute to this goal by educating about opportunities to participate in research, and by working with our research and drug development partners to ensure trials are designed to accommodate the real needs of participants. We have the chance to work together across borders and industries to ensure our global community is aware of and ready to contribute to the future of DM by participating in studies and trials.\u201d<\/p>\n

    The Global Alliance invites all members of the DM community to participate in International Myotonic Dystrophy Awareness Day on September 15th by sharing their experiences with friends and family, writing letters to or meeting with policy makers, advocating for DM research funding and provision of care, sharing\u00a0DM clinical care guidelines<\/a>\u00a0with healthcare providers, raising funds for research, and other activities that will help foster a greater understanding about the disease.<\/p>\n

    \u201cAs we take stock of our accomplishments and prepare for the future, we must continue to work together to raise awareness of myotonic dystrophy amongst the general population, the medical community, researchers and drug developers, insurance companies, and government agencies,\u201d said Joachim Spross, General Secretary of the\u00a0German Society for Muscle Diseases (DGM)<\/a>. \u201cAs support groups, DM advocates and patients ourselves, we feel it is our duty to respond to the generational impact of this disease with efforts to amass more resources to reduce the time to a diagnosis, improve quality of life, provide appropriate and early clinical care, encourage trial participation, and find effective treatments.\u00a0Together, we can and will change the future of myotonic dystrophy.<\/strong>\u201d<\/p>\n

    ###<\/p>\n

    Established in 2021, the Global Alliance for Myotonic Dystrophy Awareness includes over 50 international nonprofit organisations, academic and research institutions, biotechnology and pharmaceutical companies, patient advocacy groups, and others working together to raise awareness about myotonic dystrophy. Learn more about how to join the movement and access myotonic dystrophy resources at:\u00a0https:\/\/www.myotonic.org\/international-dm-day<\/a>.<\/p>\n

    <\/div>\n

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

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

    <\/div>\n
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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

    <\/div>\n
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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

    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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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

    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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    <\/a><\/p>\n

    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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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

    <\/div>\n
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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

    \n

    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

    <\/div>\n
    \n

    <\/a><\/p>\n

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

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    <\/a><\/p>\n

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

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    <\/a><\/p>\n

    Worldwide<\/strong>\u00a0–\u00a0International Myotonic Dystrophy Consortium<\/a>*<\/p>\n<\/div>\n<\/div>\n<\/div>\n

    An * indicates a founding member of the Myotonic Dystrophy Awareness Global Alliance.<\/p>\n

    If you are a group, organization, hospital, academic institution or company interested in officially joining the Global Alliance to raise awareness of myotonic dystrophy and would like to add your name and logo to the team,\u00a0please complete this form.<\/a><\/p>\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 US Contact Name: Tanya Stevenson US Contact Email:\u00a0Tanya.Stevenson@myotonic.org UK Contact Name: Emma-Jayne Ashley UK Contact Email:\u00a0CureDM@outlook.com Japan Contact Name: Midori Senoo Japan Contact Email:\u00a0Contact@dm-family.net FOR IMMEDIATE RELEASE International Myotonic Dystrophy Awareness Day 2022 July 23, 2022, Worldwide:\u00a0A global alliance of over 50 […]<\/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-13357","post","type-post","status-publish","format-standard","hentry","category-news"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/posts\/13357","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/users\/9"}],"replies":[{"embeddable":true,"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/comments?post=13357"}],"version-history":[{"count":0,"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/posts\/13357\/revisions"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/media?parent=13357"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/categories?post=13357"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/tags?post=13357"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}