May 18, 2024<\/strong>\n8:30 AM – 7:00 PM<\/strong>\nCovel Commons<\/strong><\/a>\n330 De Neve Dr, Los Angeles, CA 90095<\/a><\/p>\n<\/iframe><\/p>\n<h2>The DM Community Unites at the Fifth 2024 MDF Regional Conference<\/h2>\n<p>The fifth 2024 MDF Regional Conference took place on Saturday, May 18, 2024 at Covel Commons on the UCLA campus in Los Angeles, CA. With over 125 registrants joining from 9 US States and 3 countries – we are thrilled that so many 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\u00a0<a href=\"https:\/\/www.uclahealth.org\/\" target=\"_blank\" rel=\"noopener\">UCLA Health<\/a>, for hosting us.<\/p>\n<p>The day’s program included 17 educational sessions exploring research, mental health, exercise, symptom management, and other critical topics for DM families, plus opportunities networking and fun! Over 40% 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’s mission of community, care, and a cure!<\/p>\n<p class=\"text-align-center\"><a href=\"https:\/\/www.facebook.com\/media\/set\/?vanity=MyotonicStrong&set=a.844626871031395\" target=\"_blank\" rel=\"noopener\"><em><strong>Click here to view all our Event Photos on Facebook! >>><\/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\/LA4.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\/LA3.png\" width=\"4646\" height=\"3097\" data-entity-uuid=\"dffd1489-bfa3-47a5-a29e-4dac392ea1f7\" 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\/LA2.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\/LA1.png\" width=\"5570\" height=\"3713\" data-entity-uuid=\"6a86a0ba-588f-4128-a48c-85ee7ee9c163\" 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 & Program<\/h2>\n<p>This MDF Regional Conference will include 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<p><strong><u>Note:<\/u><\/strong>\u00a0The Regional Conference Sessions\u00a0<u>will not<\/u>\u00a0be split into individual Community Tracks.<\/p>\n<p><a href=\"https:\/\/myotonic.org\/wp-content\/uploads\/MDF-2024-Regional-Conference_Los-Angeles-CA_Program.pdf\"><em>Click here to view the full Program!<\/em><\/a><\/p>\n<h2>General Session Descriptions<\/h2>\n<p><strong>Welcome & Introduction to DM Resources<\/strong><br \/>\n<em>The Myotonic Dystrophy Foundation & Perry Shieh, MD, PhD, UCLA Health<\/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 About Clinical Trials<\/strong><br \/>\n<em>Perry Shieh, MD, PhD, UCLA Health<\/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: DM1 & DM2<\/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 & Payam Soltanzadeh, MD, UCLA Health<\/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&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, & PepGen<\/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 & 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 & Payam Soltanzadeh, MD, UCLA Health<\/em><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 & 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 \/>\n<a href=\"https:\/\/www.myotonic.org\/sarah-berman\"><em>Sarah Berman<\/em><\/a><em>,\u00a0<\/em><a href=\"https:\/\/www.myotonic.org\/john-cooley\"><em>John Cooley<\/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>Mental Health and DM<\/strong><br \/>\n<em>Melissa M. Dixon, PhD, MS, University of Utah<\/em><br \/>\nA leading expert will provide a comprehensive overview of mental health & DM, including:<\/p>\n<ul>\n<li>Provide a comprehensive understanding of mental health.<\/li>\n<li>Tips for managing mental health and DM.<\/li>\n<li>An interactive Q&A.<\/li>\n<\/ul>\n<p><strong>Sleep and Breathing in Myotonic Dystrophy\u00a0<\/strong><br \/>\n<em>Ravi S. Aysola, MD, UCLA Health<\/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>Daniel Cruz, MD, PhD, UCLA Health<\/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>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<h2>JOA Session Descriptions<\/h2>\n<p><strong>Stump the Doctor<\/strong><br \/>\n<em>Perry Shieh, MD, PhD, UCLA Health<\/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&A format. Can you stump the doctor?<\/p>\n<p><strong>Let’s Talk About Feelings<\/strong><br \/>\n<em>Melissa M. Dixon, PhD, MS, University of Utah<\/em><br \/>\nJOAs will have the opportunity to join facilitator, Dr. Dixon, for a discussion on their experiences and connect with peers.<\/p>\n<p><strong>Movement Moment\u00a0<\/strong><br \/>\n<em>Lucie Shiffman, Senior Community Engagement Manager, MDF<\/em><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>Games \/ Karaoke<\/strong><br \/>\n<em>Ann Woodbury, Co-Facilitator of the MDF JOA Warriors Support Group<\/em><br \/>\nCalling all JOAs! Join us for the highly requested karaoke and games session. MDF is excited to provide this opportunity for connection at the Conference.<\/p>\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 fifth 2024 MDF Regional Conference took place on Saturday, May 18, 2024 at Covel Commons on the UCLA campus in Los Angeles, CA.<\/p>\n","protected":false},"featured_media":18743,"parent":0,"template":"","class_list":["post-18742","events","type-events","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/events\/18742","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/events"}],"about":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/types\/events"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/media\/18743"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/media?parent=18742"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
<\/iframe><\/p>\n<h2>The DM Community Unites at the Fifth 2024 MDF Regional Conference<\/h2>\n<p>The fifth 2024 MDF Regional Conference took place on Saturday, May 18, 2024 at Covel Commons on the UCLA campus in Los Angeles, CA. With over 125 registrants joining from 9 US States and 3 countries – we are thrilled that so many 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\u00a0<a href=\"https:\/\/www.uclahealth.org\/\" target=\"_blank\" rel=\"noopener\">UCLA Health<\/a>, for hosting us.<\/p>\n<p>The day’s program included 17 educational sessions exploring research, mental health, exercise, symptom management, and other critical topics for DM families, plus opportunities networking and fun! Over 40% 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’s mission of community, care, and a cure!<\/p>\n<p class=\"text-align-center\"><a href=\"https:\/\/www.facebook.com\/media\/set\/?vanity=MyotonicStrong&set=a.844626871031395\" target=\"_blank\" rel=\"noopener\"><em><strong>Click here to view all our Event Photos on Facebook! >>><\/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\/LA4.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\/LA3.png\" width=\"4646\" height=\"3097\" data-entity-uuid=\"dffd1489-bfa3-47a5-a29e-4dac392ea1f7\" 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\/LA2.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\/LA1.png\" width=\"5570\" height=\"3713\" data-entity-uuid=\"6a86a0ba-588f-4128-a48c-85ee7ee9c163\" 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 & Program<\/h2>\n<p>This MDF Regional Conference will include 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<p><strong><u>Note:<\/u><\/strong>\u00a0The Regional Conference Sessions\u00a0<u>will not<\/u>\u00a0be split into individual Community Tracks.<\/p>\n<p><a href=\"https:\/\/myotonic.org\/wp-content\/uploads\/MDF-2024-Regional-Conference_Los-Angeles-CA_Program.pdf\"><em>Click here to view the full Program!<\/em><\/a><\/p>\n<h2>General Session Descriptions<\/h2>\n<p><strong>Welcome & Introduction to DM Resources<\/strong><br \/>\n<em>The Myotonic Dystrophy Foundation & Perry Shieh, MD, PhD, UCLA Health<\/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 About Clinical Trials<\/strong><br \/>\n<em>Perry Shieh, MD, PhD, UCLA Health<\/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: DM1 & DM2<\/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 & Payam Soltanzadeh, MD, UCLA Health<\/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&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, & PepGen<\/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 & 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 & Payam Soltanzadeh, MD, UCLA Health<\/em><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 & 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 \/>\n<a href=\"https:\/\/www.myotonic.org\/sarah-berman\"><em>Sarah Berman<\/em><\/a><em>,\u00a0<\/em><a href=\"https:\/\/www.myotonic.org\/john-cooley\"><em>John Cooley<\/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>Mental Health and DM<\/strong><br \/>\n<em>Melissa M. Dixon, PhD, MS, University of Utah<\/em><br \/>\nA leading expert will provide a comprehensive overview of mental health & DM, including:<\/p>\n<ul>\n<li>Provide a comprehensive understanding of mental health.<\/li>\n<li>Tips for managing mental health and DM.<\/li>\n<li>An interactive Q&A.<\/li>\n<\/ul>\n<p><strong>Sleep and Breathing in Myotonic Dystrophy\u00a0<\/strong><br \/>\n<em>Ravi S. Aysola, MD, UCLA Health<\/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>Daniel Cruz, MD, PhD, UCLA Health<\/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>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<h2>JOA Session Descriptions<\/h2>\n<p><strong>Stump the Doctor<\/strong><br \/>\n<em>Perry Shieh, MD, PhD, UCLA Health<\/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&A format. Can you stump the doctor?<\/p>\n<p><strong>Let’s Talk About Feelings<\/strong><br \/>\n<em>Melissa M. Dixon, PhD, MS, University of Utah<\/em><br \/>\nJOAs will have the opportunity to join facilitator, Dr. Dixon, for a discussion on their experiences and connect with peers.<\/p>\n<p><strong>Movement Moment\u00a0<\/strong><br \/>\n<em>Lucie Shiffman, Senior Community Engagement Manager, MDF<\/em><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>Games \/ Karaoke<\/strong><br \/>\n<em>Ann Woodbury, Co-Facilitator of the MDF JOA Warriors Support Group<\/em><br \/>\nCalling all JOAs! Join us for the highly requested karaoke and games session. MDF is excited to provide this opportunity for connection at the Conference.<\/p>\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 fifth 2024 MDF Regional Conference took place on Saturday, May 18, 2024 at Covel Commons on the UCLA campus in Los Angeles, CA.<\/p>\n","protected":false},"featured_media":18743,"parent":0,"template":"","class_list":["post-18742","events","type-events","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/events\/18742","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/events"}],"about":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/types\/events"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/media\/18743"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/fr\/wp-json\/wp\/v2\/media?parent=18742"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}