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The 2022 MDF Annual Conference – sometimes called the \u201cfamily reunion\u201d – took place from Friday, September 9th through Saturday, September 10th, 2022, at Paradise Point in San Diego, CA. With over 625 registrants, and hundreds of participants in-person & online – joining\u00a0from 39\u00a0US\u00a0States and 14 countries – we are thrilled that so many of our incredible\u00a0community members and professionals could once again unite to advance the MDF mission of Community, Care, and a Cure!<\/p>\n
MDF offers a special thank you\u00a0to\u00a0Avidity Biosciences<\/a>\u00a0for hosting two laboratory\u00a0tours\u00a0the Thursday before the Conference for 40 members of the DM Community to learn more about their drug development process and progress towards a treatment for DM1.<\/p>\n This year’s program included 23 educational sessions exploring research, drug development, symptom management, and other critical topics for DM families, plus opportunities for formal and informal networking and fun.\u00a0Over 184 Conference first-timers from across the country attended our First Timers\u2019 Tea to connect with\u00a0other families new to the community,\u00a0board members and support group facilitators. Attendee feedback on the impact of gathering in person was overwhelmingly positive, and further solidifies the\u00a0MDF Annual Conference\u00a0as the crown jewel of MDF events!<\/p>\n MDF is thrilled to congratulate and honor our three award winners for their uncontested commitment and service to the myotonic dystrophy community:<\/p>\n Thank you to everyone who participated in the 2022 MDF Annual Conference Raffle! Your support helps funds our critically important work on behalf of individuals and families living with myotonic dystrophy. Congratulations to the raffle winners!<\/p>\n Traditional poster sessions combine a visual representation of the findings of a paper\/study \u2013 the poster – with the opportunity for individualized, informal discussion of the presenter\u2019s work. MDF was thrilled to make this opportunity available at the 2022 MDF Annual Conference in a hybrid format, where attendees could view posters in-person and virtually.\u00a0Click here to view the 2022 MDF Annual Conference DM Research Poster Abstracts.<\/a><\/p>\n MDF is actively working to make recorded sessions publicly available on the Digital Academy as soon as possible!<\/strong>\u00a0Click on the hyperlinked titles below to access each sessions recording.<\/p>\n Re-watch and share your favorite\u00a0presentations and learn more about myotonic dystrophy with our extensive catalog of video resources. Watch previous conference sessions, webinars, and technical explanations on DM. Find hope and inspiration from community members sharing their stories and learn about the impact of the Foundation.\u00a0Click here to start exploring the MDF Digital Academy.<\/a><\/p>\n Sessions not listed below were\u00a0not recorded by request or in order to protect the privacy of the live attendees.<\/em><\/p>\n Click here to download a PDF of the 2022 MDF Annual Conference Program Book to learn more about our sessions, speakers, and sponsors.<\/a><\/strong><\/p>\n The Conference incorporated many traditional events and session such as updates on drug development, highlights of recent successes and future goals of the foundation, and inspiring stories from the community.<\/p>\n This track was designed for\u00a0individuals and families living with myotonic dystrophy type 1 (DM1).<\/p>\n This track was designed for\u00a0individuals and families living with myotonic dystrophy type 2 (DM2).<\/p>\n This track was designed for family members, caregivers, those who are their own caregiver; anyone living with any type of DM.<\/p>\n This track is specifically designed for clinicians, researchers, industry, and other DM professionals.<\/p>\n The 2022 MDF Annual Conference – sometimes called the \u201cfamily reunion\u201d – took place from Friday, September 9th through Saturday, September 10th, 2022, at Paradise Point in San Diego, CA.<\/p>\n","protected":false},"featured_media":18790,"parent":0,"template":"","class_list":["post-18789","events","type-events","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/events\/18789","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\/18790"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/media?parent=18789"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}Congratulations to Our Award & Raffle Winners<\/h2>\n
Community Awards<\/h3>\n
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\n4th Annual Kayla Vittek Memorial Award for Outstanding Community Advocate, presented by Lisa Harvey-Duren<\/li>\n
\nAbove & Beyond Award, presented by MDF’s CEO, Tanya Stevenson, EdD, MPH<\/li>\n
\nLifetime Achievement Award, presented by Larry Lord & Darren Monckton, PhD<\/li>\n<\/ul>\n\n![](\"https:\/\/myotonic.org\/wp-content\/uploads\/Jones-Award.png\")
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<\/div>\n<\/div>\nRaffle Winners<\/h3>\n
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View all the photos from the 2022 MDF Annual Conference on our Facebook Photo Album!<\/a><\/h3>\n
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<\/div>\n<\/div>\nDM Research Poster\u00a0Abstracts<\/h2>\n
Watch the Recorded Sessions<\/h2>\n
General Sessions<\/h3>\n
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\nMDF leadership and Board of Directors were eager to share exciting updates about the state of Foundation, International Myotonic Dystrophy Awareness Day, and the MDF strategic plan.<\/li>\n
\nA\u00a0celebration of the DM community, including the 4th Annual Kayla Vittek Memorial Award for Outstanding Community Advocate presented by Lisa Harvey-Duren.\u00a0Also awarded were the Above & Beyond Award and Lifetime Achievement Award.<\/li>\n
\nRepresentatives from biotech and pharma companies provided updates on their drug development efforts in the DM field. Part 1 companies include: Harmony Biosciences, Avidity Biosciences, Dyne Therapeutics, GrittGene, and AMO Pharma Ltd.<\/li>\n
\nRepresentatives from biotech and pharma companies provided updates on their drug development efforts in the DM field. Part 2 companies include: PepGen, Juvena Therapeutics, Entrada Therapeutics, NeuBase Therapeutics, and ARTHEx Biotech.<\/li>\n
\nA networking event for those who have not attended a Conference before to orient you to the Conference, MDF, and the DM community.<\/li>\n
\nPresented by Christopher Knauf, Esq.
\nMany individuals living with DM \u2013 types 1 and 2 \u2013 and their families may find themselves in situations where they need to know their rights, especially rights related to employment, education, public accommodation, genetic counseling, and healthcare. This workshop provided an overview of key laws such as the ADA, IDEA, ACA, GINA, which may protect you or your family. It will cover some common situations when these laws can be used and address processes for activating those rights, including when to consider engaging a lawyer or other advocate. Learn, too, about organizations, agencies, and other resources to help empower yourself and your family.<\/li>\n
\nJacinda Sampson, MD of Stanford University\u00a0and\u00a0Kevin Brennan of Bluebird Strategies
\nLearn about biobanks, natural history studies, clinical trials, registries, and other types of research, the role that they play in drug development, and how DM1 and DM2 families can participate right now. Hear how MDF has and continues to facilitate research towards a cure, and discover ways that you can help increase federal funding for DM research right now!<\/li>\n<\/ul>\nDM Type 1<\/h3>\n
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\nChamindra Konersman, MD of\u00a0UC San Diego Health
\nPresented by Chamindra Konersman, MD. Learn from a leading expert about the causes and genetics underlying DM1, how and when in life it can affect different systems of the body, tips to help self-manage symptoms, and best practices for working with a care team to ensure the best quality of life. Learn, too, about the latest research in DM1 and how you can get involved.<\/li>\n
\nMindy Kim, Bill Nuttall,\u00a0Jeannine DeSoi, and Dean Sage
\nHear from a panel of individuals with DM1 about how they live their best life.<\/li>\n<\/ul>\nDM Type 2<\/h3>\n
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\nThurman Wheeler, MD of Massachusetts General Hospital
\nLearn from a leading expert about the causes and genetics underlying DM2, how and when in life it can affect different systems of the body, and how best to self-manage and work with a care team to ensure the best quality of life. Learn, too, about the latest research in DM2 and how you can get involved.<\/li>\n
\nTom McPeek, Lorrie Gallagher, E. Kahlifa, and Elyse Posner
\nHear from a panel of individuals with DM2\u00a0about how they live their best life.<\/li>\n
\nAraya Puwanant, MD of Wake Forest University
\nThis session will start with a short review of the CNS manifestations in DM2 followed by a discussion of pilot data in everyday terms from a recent DM2 brain imaging and cognitive study. It will also include a discussion of how brain abnormalities could potentially affect motor function.<\/li>\n<\/ul>\nCaregivers & Self-care<\/h3>\n
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\nSamar Muslemani, OT, MSc of the\u00a0University of Sherbrooke
\nA leading clinician and researcher in occupational therapy (OT) defines this form of healthcare and advise on how it can be used by individuals with DM1 and DM2 and their families. She also discusses the ways that adaptation, task alteration, devices, or environmental changes can help individuals with DM, both children and adults, make their daily life easier. She specifically addresses common issues and solutions in different activities such as moving, toileting, and eating for adults and children.<\/li>\n
\nMelissa McIntyre, DPT of the University of Utah Health
\nJoin a leading physical therapist whose clinical care and research focus centers on individuals with neuromuscular disorders. In this session, she discusses\u00a0the basics of physical therapy (PT) and what it can do for DM populations \u2013 both type 1 and type 2, adult and pediatric. Additionally, this session reviews adaptive sports and novel adaptive equipment.<\/li>\n
\nSuzanne Perkins, PhD, Kim McPeek, Emily Jones, and Julie LeBoeuf
\nHear from a panel of spouses and other caregivers about how they live their best life.<\/li>\n<\/ul>\nProfessionals<\/h3>\n
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\nThomas A. Cooper, MD,\u00a0Mark Tarnopolsky, MD, PhD, FRCP(C),\u00a0Elise Duchesne, PhD,\u00a0Andrew Berglund, PhD, and\u00a0Tina Duong MPT, PhD
\nThe Professional Track begins with a session on DM and exercise. Thomas A. Cooper, MD, presents, Endurance exercise leads to beneficial molecular and physiological effects in the HSALR mouse model of myotonic dystrophy type 1. Mark Tarnopolsky, MD, PhD, FRCP(C) presents, Exercise and nutritional strategies for myotonic dystrophy. After a short break, Elise Duchesne, PhD, presents, Strength training effectively alleviates skeletal muscle impairments in myotonic dystrophy type 1. Andrew Berglund, PhD., presents, the Analysis of individual transcriptomic response to strength training for myotonic dystrophy type 1 patients reveals rescue at the molecular level. The session will end with a presentation by Tina Duong MPT, PhD.<\/li>\n
\nAndrew Berglund, PhD\u00a0and John Lueck, PhD
\nFirst in our lineup of presentations on future directions in DM research, John Lueck, PhD, presents, Generation of Bi-channelopathy DM Mice and Drug Repurposing. Then, Dr. Berglund returns to the podium to present on screening and natural products.<\/li>\n
\nLaura Ranum, PhD\u00a0and\u00a0Eric Wang, PhD
\nOpening the afternoon sessions on Future Directions of DM Research is Laura Ranum, PhD, presenting, A BAC transgenic mouse model for DM2. Afterward, Eric Wang, PhD, will ask the question: is gene therapy in the cards for myotonic dystrophy?<\/li>\n
\nSuzanne McDermott, PhD,\u00a0Nicholas Johnson, MD, and\u00a0Jeffrey Statland, MD
\nSuzanne McDermott, PhD, presents, Groups of Signs and Symptoms in adult-onset myotonic dystrophy type 1. Nicholas Johnson, MD, and Jeffrey Statland, MD, present, The Myotonic Dystrophy Clinical Research Network (DMCRN): observational studies as the foundation for clinical trials.<\/li>\n<\/ul>\nThank You to Our Conference Sponsors<\/h2>\n
\n\nDiamond Tier<\/h3>\n
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Platinum Tier<\/h3>\n
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