{"id":18549,"date":"2024-03-23T16:29:32","date_gmt":"2024-03-23T23:29:32","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?post_type=events&#038;p=18549"},"modified":"2026-02-11T16:44:45","modified_gmt":"2026-02-12T00:44:45","slug":"2024-mdf-regional-conference-gainesville-fl","status":"publish","type":"events","link":"https:\/\/myotonic.org\/es\/events\/2024-mdf-regional-conference-gainesville-fl\/","title":{"rendered":"2024 MDF Regional Conference, Gainesville, FL"},"content":{"rendered":"<h2 class=\"text-align-center rtecenter\">2024\u00a0MDF Regional Conferences<\/h2>\n<h3 class=\"text-align-center rtecenter\">MDF Brought our Conference to Gainesville,\u00a0FL<\/h3>\n<h3 class=\"text-align-center rtecenter\"><strong>March 23, 2024<\/strong><br \/>\n<strong>8:30 AM &#8211; 7:00 PM<\/strong><br \/>\n<a href=\"https:\/\/maps.app.goo.gl\/saqSy4wEZGYM9Atn9\" target=\"_blank\" rel=\"noopener\"><strong>George T. Harrell Medical Education Building<\/strong><\/a><\/h3>\n<div>\n<p><iframe title=\"Gainesville, Florida Highlights - 2024 Myotonic Dystrophy Foundation Regional Conference\" width=\"800\" height=\"450\" src=\"https:\/\/www.youtube.com\/embed\/skcRRlnW1YA?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 First 2024 MDF Regional Conference<\/h2>\n<p>The first 2024 MDF Regional Conference took place on Saturday, March 23, 2024 at the Harrell Medical Education Building at the University of Florida in Gainesville, FL. With over 190 registrants joining from 15 US States and 3 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!<\/p>\n<p>MDF offers a special thank you to the University of Florida&#8217;s\u00a0<a href=\"https:\/\/neurogenetics.med.ufl.edu\/\" target=\"_blank\" rel=\"noopener\">Center for NeuroGenetics<\/a>, and\u00a0<a href=\"https:\/\/myotonic.org\/research-fellow-feature-emma-shea\/\">Emma Shea<\/a>\u00a0of the\u00a0<a href=\"https:\/\/neurogenetics.med.ufl.edu\/faculty-labs\/wang-lab\/\" target=\"_blank\" rel=\"noopener\">Wang Lab<\/a>, for hosting a laboratory tour the Friday before the Conference. The tour took 50 members of the DM Community through multiple labs working on myotonic dystrophy research with hands on activities to learn more about the research process, including DNA extraction, pipetting samples for gel electrophoresis, and staining components of a cell for microscopy analysis!<\/p>\n<p>The following day&#8217;s program included 19 educational sessions exploring research, drug development, symptom management, and other critical topics for DM families, plus opportunities networking and fun! Over 50% 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.800161775477905\" 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\/1_Check-in_2024-Florida.png\" width=\"1200\" height=\"675\" \/><\/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\/DNA-Extract_2024-Florida.png\" width=\"1200\" height=\"675\" \/><\/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\/First-Timer_2024-Florida.png\" width=\"1200\" height=\"675\" \/><\/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\/Conga-Line_2024-Florida.png\" width=\"1200\" height=\"675\" \/><\/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.\u00a0<em>Scroll down this page find a list of session descriptions.<\/em><\/p>\n<p><strong><u>Note:<\/u><\/strong>\u00a0The Regional Conference Sessions\u00a0<em><u>are not<\/u><\/em>\u00a0be split into individual Community Tracks.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-18571 size-full\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/screencapture-myotonic-org-mdf-regional-conference-gainesville-fl-2026-02-11-17_42_38.png\" alt=\"\" width=\"1217\" height=\"1735\" srcset=\"https:\/\/myotonic.org\/wp-content\/uploads\/screencapture-myotonic-org-mdf-regional-conference-gainesville-fl-2026-02-11-17_42_38.png 1217w, https:\/\/myotonic.org\/wp-content\/uploads\/screencapture-myotonic-org-mdf-regional-conference-gainesville-fl-2026-02-11-17_42_38-210x300.png 210w, https:\/\/myotonic.org\/wp-content\/uploads\/screencapture-myotonic-org-mdf-regional-conference-gainesville-fl-2026-02-11-17_42_38-718x1024.png 718w, https:\/\/myotonic.org\/wp-content\/uploads\/screencapture-myotonic-org-mdf-regional-conference-gainesville-fl-2026-02-11-17_42_38-768x1095.png 768w, https:\/\/myotonic.org\/wp-content\/uploads\/screencapture-myotonic-org-mdf-regional-conference-gainesville-fl-2026-02-11-17_42_38-1077x1536.png 1077w\" sizes=\"(max-width: 1217px) 100vw, 1217px\" \/><\/p>\n<h2>General Session Descriptions<\/h2>\n<p><strong>Welcome &amp; Introduction to DM Resources<\/strong><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>Clinical Trial Readiness<\/strong><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 \/>\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 \/>\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 Overview<\/strong><br \/>\nThis session is for those new to the DM1 community and those seeking a refresher.\u202fA leading expert will provide a comprehensive overview of DM1:<\/p>\n<ul>\n<li>Causes and genetics underlying DM1<\/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>DM2 Overview<\/strong><br \/>\nThis session is for those new to the DM2 community and those seeking a refresher.\u202fA leading expert will provide a comprehensive overview of DM2:<\/p>\n<ul>\n<li>Causes and genetics underlying DM2<\/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>Community Discussion Panel<\/strong><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<\/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<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\/16_IDD-Avidity.png\" width=\"234\" height=\"132\" \/><\/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\/14_IDD-Dyne.png\" width=\"225\" height=\"127\" \/><\/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\/10_IDD-PepGen.png\" width=\"245\" height=\"138\" \/><img loading=\"lazy\" decoding=\"async\" class=\"alignleft\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/3_Vertex-bronze.jpg\" 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.arthexbiotech.com\/\" target=\"_blank\" rel=\"noopener\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/9_IDD-ARTHEx.png\" width=\"165\" height=\"93\" \/><\/a><a href=\"https:\/\/www.juvenatherapeutics.com\/\" target=\"_blank\" rel=\"noopener\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/8_IDD-Juvena.jpg\" width=\"160\" height=\"90\" \/><\/a><a href=\"https:\/\/www.amo-pharma.com\/\" target=\"_blank\" rel=\"noopener\"><img loading=\"lazy\" decoding=\"async\" class=\"\" src=\"https:\/\/myotonic.org\/wp-content\/uploads\/9_IDD-AMO.jpg\" width=\"227\" height=\"128\" \/><\/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\"><\/div>\n<\/div>\n<div class=\"row\">\n<h2><\/h2>\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\/1_3x-Genetics.png\" width=\"271\" height=\"152\" \/><\/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\/1_Sanofi-adj-2.png\" width=\"220\" height=\"124\" \/><\/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 first 2024 MDF Regional Conference took place on Saturday, March 23, 2024 at the Harrell Medical Education Building at the University of Florida in Gainesville, FL.<\/p>\n","protected":false},"featured_media":18550,"parent":0,"template":"","class_list":["post-18549","events","type-events","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/events\/18549","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/events"}],"about":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/types\/events"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/media\/18550"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/media?parent=18549"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}