{"id":18750,"date":"2024-06-01T12:14:31","date_gmt":"2024-06-01T19:14:31","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?post_type=events&#038;p=18750"},"modified":"2026-02-13T12:27:21","modified_gmt":"2026-02-13T20:27:21","slug":"2024-mdf-regional-conference-seattle-wa","status":"publish","type":"events","link":"https:\/\/myotonic.org\/de\/events\/2024-mdf-regional-conference-seattle-wa\/","title":{"rendered":"2024 MDF Regional Conference, Seattle, WA"},"content":{"rendered":"<h2 class=\"text-align-center rtecenter\">2024\u00a0MDF Regional Conferences<\/h2>\n<h3 class=\"text-align-center rtecenter\">MDF is Bringing our Conference to Seattle,\u00a0WA<\/h3>\n<p class=\"text-align-center\"><strong>June 1, 2024<\/strong><br \/>\n<strong>8:30 AM &#8211; 7:00 PM<\/strong><br \/>\n<a href=\"https:\/\/maps.app.goo.gl\/914eTnx6m5M6qG6D7\" target=\"_blank\" rel=\"noopener\"><strong>Westin Seattle<\/strong><\/a><br \/>\n<a href=\"https:\/\/maps.app.goo.gl\/914eTnx6m5M6qG6D7\" target=\"_blank\" rel=\"noopener\">1900 5th Ave., Seattle, WA 98101<\/a><\/p>\n<div class=\"rtecenter col-xs-12 col-sm-12 col-md-12 col-lg-6 pull-right screen-placer\">\n<iframe title=\"Seattle, Washington Highlights - 2024 Myotonic Dystrophy Foundation Regional Conference\" width=\"800\" height=\"450\" src=\"https:\/\/www.youtube.com\/embed\/w51mviR3Uvg?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n<\/div>\n<h2>The DM Community Unites at the Sixth 2024 MDF Regional Conference<\/h2>\n<p>The sixth 2024 MDF Regional Conference took place on Saturday, June 1, 2024 at Westin Seattle in Seattle, WA. With over 125 registrants joining from 12 US States and 2 countries &#8211; we are thrilled that so many of our incredible members of our community could once again unite to advance the MDF mission of Community, Care, and a Cure! MDF offers a special thank you to the\u00a0<a href=\"https:\/\/www.seattlemuscle.org\/\" target=\"_blank\" rel=\"noopener\">Seattle Wellstone Center<\/a>, for hosting us.<\/p>\n<p>The day&#8217;s program included 14 educational sessions exploring research, mental health, exercise, symptom management, and other critical topics for DM families, plus opportunities networking and fun! Over 60% of attendees at this event were first-timers from across the country that joined us to connect with other families new to the community, board members and support group facilitators. Attendee feedback on the impact of gathering in person was overwhelmingly positive, and further solidifies MDF Conferences as a wonderful way to connect with each other and MDF&#8217;s mission of community, care, and a cure!<\/p>\n<p class=\"text-align-center\"><a href=\"https:\/\/www.facebook.com\/media\/set\/?set=a.849632943864121&amp;type=3\" target=\"_blank\" rel=\"noopener\"><em><strong>Click here to view all our Event Photos on Facebook! &gt;&gt;&gt;<\/strong><\/em><\/a><\/p>\n<div class=\"row\">\n<div class=\"col-xs-12 col-sm-6 col-md-6 col-lg-3\"><img fetchpriority=\"high\" decoding=\"async\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/SeattleRegional4.png\" width=\"5090\" height=\"3393\" data-entity-uuid=\"2680544c-016b-42c7-bd03-7ae4d893ad91\" data-entity-type=\"file\" \/><\/div>\n<div class=\"col-xs-12 col-sm-6 col-md-6 col-lg-3\"><img decoding=\"async\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/SeattleRegional1.png\" width=\"4646\" height=\"3097\" data-entity-uuid=\"6a86a0ba-588f-4128-a48c-85ee7ee9c163\" data-entity-type=\"file\" \/><\/div>\n<div class=\"col-xs-12 col-sm-6 col-md-6 col-lg-3\"><img decoding=\"async\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/SeattleRegional2.png\" width=\"5570\" height=\"3713\" data-entity-uuid=\"da0ee5d5-af29-4602-8697-2ec0ca09a2f2\" data-entity-type=\"file\" \/><\/div>\n<div class=\"col-xs-12 col-sm-6 col-md-6 col-lg-3\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/SeattleRegional3.png\" width=\"5570\" height=\"3713\" data-entity-uuid=\"dffd1489-bfa3-47a5-a29e-4dac392ea1f7\" data-entity-type=\"file\" \/><\/div>\n<\/div>\n<p><a href=\"https:\/\/www.myotonic.org\/2024-mdf-regional-conferences\">Click here to learn more about the 2024 MDF Regional Conferences!<\/a><\/p>\n<h2>Agenda &amp; Program<\/h2>\n<p>This MDF Regional Conference includes participation from local DM experts, researchers, and community members to provide a robust program including popular sessions from our past Annual Conferences.<em>\u00a0Scroll down this page find a list of session descriptions.<\/em><\/p>\n<h2>General Session Descriptions<\/h2>\n<p><strong>Welcome &amp; Introduction to DM Resources<\/strong><br \/>\n<em>The Myotonic Dystrophy Foundation &amp; Jeffrey S. Chamberlain, Ph.D., University of Washington\u00a0<\/em><br \/>\nThe Myotonic Dystrophy Foundation (MDF) works to enhance the quality of life of people living with myotonic dystrophy and to drive research focused on treatments and a cure. This session will provide a comprehensive overview of the work of MDF as well as the readily available tools and resources for the community.<\/p>\n<ul>\n<li>The Myotonic Dystrophy Family Registry (MDFR)<\/li>\n<li>Research<\/li>\n<li>Toolkits and Publications<\/li>\n<li>Support Groups<\/li>\n<li>Other tools (Find-A-Doctor, Body Systems, Digital Academy, Dispatch)<\/li>\n<\/ul>\n<p><strong>DM Research: What You Need to Know\u00a0<\/strong><br \/>\n<em>Leo Wang, MD, PhD, University of Washington\u00a0<\/em><br \/>\nClinical Trial Readiness is the unofficial theme of the 2024 Regional Conferences. As academic and industry partners work to develop treatments and a cure for myotonic dystrophy (DM), it is more important now than ever that the DM community is ready to participate in trials. This talk will provide an overview of clinical trials and help attendees think about how to prepare for upcoming trials and studies:<\/p>\n<ul>\n<li>What are clinical trials?<\/li>\n<li>What is the process to get to clinical trials (discovery, preclinical research, preclinical development, clinical research)<\/li>\n<li>Phases of clinical trials<\/li>\n<li>What a clinical trial is like for a participant<\/li>\n<li>What are natural history studies?<\/li>\n<li>Important do\u2019s and don\u2019ts of clinical trials<\/li>\n<li>Other frequently asked questions (FAQs)<\/li>\n<\/ul>\n<p><strong>Movement Moments<\/strong><br \/>\nMDF is proud to support the Myotonic Dystrophy in Motion movement which aims to unify, inspire, and encourage the international DM community to start moving. Movement can improve both the physical and mental well-being of people living with myotonic dystrophy. Movement moments are a great tool to break up sitting during sessions and could include a variety of activities:<\/p>\n<ul>\n<li>Stretching<\/li>\n<li>Chair yoga<\/li>\n<li>Tai Chi<\/li>\n<\/ul>\n<p><strong>Stump the Doctor<\/strong><br \/>\n<a href=\"https:\/\/www.myotonic.org\/john-w-day-md-phd-0\"><em>John Day<\/em><\/a><em>, MD, PhD, Stanford University<\/em><br \/>\nStump the Doctor Sessions at the conference are an opportunity for community members to meet a leading clinical expert in myotonic dystrophy and ask their most persistent, challenging questions. These sessions are open Q&amp;A format. Can you stump the doctor?<\/p>\n<p><strong>Industry Updates<\/strong><br \/>\n<em>Avidity Biosciences, Dyne Therapeutics, ARTHEx Biotech, Juvena Therapeutics, AMO Pharma, &amp; PepGen\u00a0<\/em><br \/>\nDuring this session, representatives from biotechnology and pharmaceutical companies will provide updates on their drug development efforts in the DM field.<\/p>\n<h2>Breakout Session Descriptions<\/h2>\n<p><strong>DM1 &amp; DM2: What You Need to Know<\/strong><br \/>\n<a href=\"https:\/\/www.myotonic.org\/john-w-day-md-phd-0\"><em>John Day<\/em><\/a><em>, MD, PhD, Stanford University, &amp; Leo Wang, MD, PhD, University of Washington<\/em><br \/>\nThis session is for those new to the DM community and those seeking a refresher.\u202fA leading expert will provide a comprehensive overview of DM:<\/p>\n<ul>\n<li>Causes and genetics underlying DM<\/li>\n<li>How and when in life it can affect different systems of the body<\/li>\n<li>Tips for self-management of symptoms<\/li>\n<li>How to best work with your clinical care team to ensure the best quality of life<\/li>\n<\/ul>\n<p><strong>Sleep Disorders in Myotonic Dystrophy\u00a0<\/strong><br \/>\n<em>Jeremy Chan, MD, University of Washington<\/em><br \/>\nSleep is a major concern experienced by the DM community. This session will cover sleepiness and other sleep disturbance considerations for both DM1 and DM2:<\/p>\n<ul>\n<li>How does DM affect sleep?<\/li>\n<li>The latest research on DM and sleep<\/li>\n<li>Best practices for care, monitoring, and self-management<\/li>\n<li>How common are sleep issues in DM and what are common issues?<\/li>\n<\/ul>\n<p><strong>How Myotonic Dystrophy Affects the Heart\u00a0<\/strong><br \/>\n<em>David S. Owens, MD MS, University of Washington<\/em><br \/>\nThis session should cover cardiac considerations for both DM1 and DM2:<\/p>\n<ul>\n<li>The latest research on DM and the heart<\/li>\n<li>Best practices for care, monitoring, and self-management<\/li>\n<li>This session will cover cardiac considerations for both DM1 and DM2:<\/li>\n<li>How common are heart issues in DM and what are common issues?<\/li>\n<\/ul>\n<p><strong>Genetic Testing for Myotonic Dystrophy\u00a0<\/strong><br \/>\n<em>Shawna Feely, MS, CGC, Sea Child Hospital<\/em><br \/>\nMyotonic community members often contact the Foundation with questions about genetic testing. This session will provide a comprehensive overview of genetic testing:<\/p>\n<ul>\n<li>What is genetic testing?<\/li>\n<li>What is a genetic counselor?<\/li>\n<li>The risks and benefits of testing<\/li>\n<li>Finding a lab to get tested<\/li>\n<\/ul>\n<p><strong>Rehabilitation Medicine in Myotonic Dystrophy\u00a0<\/strong><br \/>\n<em>Nassim Rad, MD, University of Washington<\/em><br \/>\nThis session will provide a comprehensive overview of occupational therapy and how individuals with DM and their families can utilize this form of healthcare and the services it provides. This session should cover the following:<\/p>\n<ul>\n<li>What is occupational therapy?<\/li>\n<li>Common issues with moving, toileting, and eating for adults and children<\/li>\n<li>Common adaptation, task alteration, or environmental changes individuals with DM could use to make daily life easier<\/li>\n<\/ul>\n<p><strong>Community Discussion Panel\u00a0<\/strong><br \/>\n<a href=\"https:\/\/www.myotonic.org\/mark-coplin\"><em>Mark Coplin<\/em><\/a><em>\u00a0&amp;\u00a0<\/em><a href=\"https:\/\/www.myotonic.org\/cindy-hubert\"><em>Cindy Hubert<\/em><\/a><br \/>\nThe Community Discussion Panel at the conference will be sessions led by MDF volunteer community leaders. Each regional conference will have a committee comprised of local community leaders who will help select panelists and topics. Examples of panel topics include:<\/p>\n<ul>\n<li>Life hacks<\/li>\n<li>CDM: What to do before your child turns 18<\/li>\n<li>Unaffected caregivers<\/li>\n<\/ul>\n<p><strong>Entertainment and Connection\u00a0<\/strong><br \/>\nMDF understands the importance of community and connection. We aim to create unique opportunities in safe and welcoming environments for attendees to connect and engage with each other. This could include a variety of activities:<\/p>\n<ul>\n<li>Networking buddy lunch<\/li>\n<li>Dance party<\/li>\n<li>Networking and social hour<\/li>\n<\/ul>\n<h2>Lab Tour at The Seattle Wellstone Center<\/h2>\n<ul>\n<li><strong>Date &amp; Time:\u00a0<\/strong>May 31st from 1:00 PM to 2:30 PM<\/li>\n<li><strong>Location:<\/strong>\u00a0The Seattle Wellstone Center,\u00a0<a href=\"https:\/\/maps.app.goo.gl\/8Tw78VtRnRAdDxYj8\" target=\"_blank\" rel=\"noopener\">850 Republican Street, Seattle WA 98109<\/a><\/li>\n<\/ul>\n<div class=\"col-xs-12\">\n<div class=\"row\">\n<h2>Platinum Sponsor<\/h2>\n<div class=\"col-xs-12 col-sm-12 col-md-6\"><a href=\"https:\/\/www.aviditybiosciences.com\/\" target=\"_blank\" rel=\"noopener\"><img loading=\"lazy\" decoding=\"async\" class=\"\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/17_IDD-Avidity.png\" width=\"398\" height=\"224\" \/><\/a><\/div>\n<\/div>\n<div class=\"row\">\n<h2>Gold Sponsor<\/h2>\n<div class=\"col-xs-12 col-sm-12 col-md-4\"><a href=\"https:\/\/www.dyne-tx.com\/\" target=\"_blank\" rel=\"noopener\"><img loading=\"lazy\" decoding=\"async\" class=\"\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/15_IDD-Dyne.png\" width=\"295\" height=\"166\" \/><\/a><\/div>\n<\/div>\n<div class=\"row\">\n<h2>Silver Sponsors<\/h2>\n<div class=\"col-xs-12 col-sm-6 col-md-4 col-lg-3\"><a href=\"https:\/\/pepgen.com\/\" target=\"_blank\" rel=\"noopener\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/11_IDD-PepGen.png\" width=\"256\" height=\"144\" \/><\/a><\/div>\n<div class=\"col-xs-12 col-sm-6 col-md-4 col-lg-3\"><a href=\"https:\/\/www.vrtx.com\/\" target=\"_blank\" rel=\"noopener\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/4_Vertex-bronze.jpg\" width=\"241\" height=\"136\" \/><\/a><a href=\"https:\/\/www.arthexbiotech.com\/\" target=\"_blank\" rel=\"noopener\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/10_IDD-ARTHEx.png\" width=\"177\" height=\"100\" \/><\/a><\/div>\n<div class=\"col-xs-12 col-sm-6 col-md-4 col-lg-3\"><\/div>\n<div class=\"col-xs-12 col-sm-6 col-md-4 col-lg-3\"><a href=\"https:\/\/www.juvenatherapeutics.com\/\" target=\"_blank\" rel=\"noopener\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/9_IDD-Juvena.jpg\" width=\"216\" height=\"122\" \/><\/a><\/div>\n<div class=\"col-xs-12 col-sm-6 col-md-4 col-lg-3\"><a href=\"https:\/\/www.amo-pharma.com\/\" target=\"_blank\" rel=\"noopener\"><img loading=\"lazy\" decoding=\"async\" class=\"\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/10_IDD-AMO.jpg\" width=\"181\" height=\"102\" \/><\/a><\/div>\n<\/div>\n<div class=\"row\">\n<h2>Bronze Sponsor<\/h2>\n<div class=\"col-xs-12 col-sm-6 col-md-4 col-lg-3\"><img loading=\"lazy\" decoding=\"async\" class=\"\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2_3x-Genetics.png\" width=\"203\" height=\"114\" \/><\/div>\n<\/div>\n<div class=\"row\">\n<h2>Supporting Sponsor<\/h2>\n<div class=\"col-xs-12 col-sm-6 col-md-4 col-lg-3\"><img loading=\"lazy\" decoding=\"async\" class=\"\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/2_Sanofi-adj-2.png\" width=\"233\" height=\"131\" \/><\/div>\n<\/div>\n<\/div>\n<h1>Questions?<\/h1>\n<p>Reach out to MDF by emailing\u00a0<a href=\"mailto:info@myotonic.org\">info@myotonic.org<\/a>\u00a0or calling 415-800-7777.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>The sixth 2024 MDF Regional Conference took place on Saturday, June 1, 2024 at Westin Seattle in Seattle, WA.<\/p>\n","protected":false},"featured_media":18751,"parent":0,"template":"","class_list":["post-18750","events","type-events","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/events\/18750","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/events"}],"about":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/types\/events"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/media\/18751"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/media?parent=18750"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}