@myotonicstrong Avatar @myotonicstrong Myotonic Dystrophy Foundation

Myotonic Dystrophy Foundation posts on YouTube about in the, community, dr, share the most. They currently have [-----] followers and [---] posts still getting attention that total [--] engagements in the last [--] hours.

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Social Influence

Social category influence stocks 21.78% currencies 1.98% countries 1.98% travel destinations 0.99% finance 0.99%

Social topic influence in the 18.81%, community 15.84%, dr 15.84%, share 13.86%, university of 13.86%, dyne therapeutics #5, health 8.91%, indiana 7.92%, biotech 6.93%, developers 6.93%

Top assets mentioned Dyne Therapeutics, Inc. (DYN) Sanofi (SNY) Novartis AG (NVS) Ionis Pharmaceuticals, Inc. Common Stock (IONS)

Top Social Posts

Top posts by engagements in the last [--] hours

"Dyne Therapeutics Demonstrating FORCE Platform Delivery to CNS - [----] Meet the DM Drug Developers Presented June [--] [----]. Each month biotechnology pharmaceutical and academic partners large and small working on treatments and a cure for myotonic dystrophy will sit down with our community to share their progress and answer your questions. Learn more about Dyne Therapeutics at https://www.dyne-tx.com/ Dr. Ashish Dugar Chief Medical Affairs Officer at Dyne Therapeutics presents released preclinical data demonstrating that Dynes FORCE platform achieved delivery to the brain in non-human primates"
YouTube Link 2023-06-21T19:27Z [----] followers, [---] engagements

"Industry Updates - [----] Myotonic Dystrophy Foundation Conference Myotonic Dystrophy Industry Updates was presented in partnership by Euro-DyMA (European Dystrophia Myotonica Association) and the Myotonic Dystrophy Foundation (MDF) as a part of the [----] MDF Conference on May 2nd and 3rd [----]. Learn more about Euro-DyMA at https://euro-dyma.eu/ Learn more about MDF & the [----] MDF Conference at https://www.myotonic.org/2025-mdf-annual-conference In this session representatives from biotech and pharma companies provide updates on their drug development efforts in the DM field. Thank you to our"
YouTube Link 2025-06-16T23:38Z [----] followers, [---] engagements

"Ask-the-Expert: Genetics & Myotonic Dystrophy Originally presented on August [--] [----]. Do you have questions for myotonic dystrophy (DM) doctors and therapists Watch our Ask-the-Expert: "Genetics of DM: Understanding Inheritance Expansions and Research" This webinar will feature MDF's Chief Scientific Officer Andy Rohrwasser PhD MBA. ========== About the Presenters: Andy Rohrwasser PhD MBA Chief Scientific Officer at MDF Dr. Rohrwasser joined MDF in November [----] as CSO. He brings a diverse background in academic science venture backed start-ups and public health. Andys domain expertise and"
YouTube Link 2025-12-30T15:52Z [----] followers, [--] engagements

"Avidity Biosciences Dec [----] - Meet the DM Drug Developers Each month biotechnology pharmaceutical and academic partners large and small working on treatments and a cure for myotonic dystrophy sit down with our community to share their progress and answer your questions. The Avidity Biosciences team presents "MARINA Data: A Preliminary Assessment from the Phase 1/2 Clinical Trial for DM1" on December [--] [----]. Learn more about Avidity Biosciences at https://www.aviditybiosciences.com/ Presenters include: + Kelly DiTrapani RN BSN BA Avidity Biosciences Vice President of Medical Affairs +"
YouTube Link 2022-12-17T00:09Z [----] followers, [----] engagements

"Ask-the-Expert: Pediatric Endocrinology & Myotonic Dystrophy Originally presented on August [--] [----]. Do you have questions for myotonic dystrophy (DM) doctors and therapists Watch our webinar "Pediatric Endocrinology & DM: Growing with DM." This webinar will feature Nadia Merchant MD a Pediatric Endocrinologist and Geneticist at Childrens Health in Dallas Texas. Dr. Merchant is also an Assistant Professor of Pediatrics at UT Southwestern ========== About the Presenters: Nadia Merchant MD Pediatric Endocrinologist & Geneticist Nadia Merchant MD is a Pediatric Endocrinologist and Geneticist at"
YouTube Link 2025-12-30T15:52Z [----] followers, [--] engagements

"Dyne Therapeutics - Meet the DM Drug Developers [----] Dyne Therapeutics presents updates on their DM1 program & new clinical data from their ongoing phase 1/2 ACHIEVE trial. Learn more about Dyne Therapeutics at: https://www.dyne-tx.com/ ========================== Presenters include: Ashish Dugar PhD MBA Chief Medical Affairs Officer Dr. Dugar brings to Dyne over [--] years of broad experience across medical affairs clinical and commercial development and real-world evidence generation experience. Prior to joining Dyne Dr. Dugar served as vice president and global head of medical affairs at"
YouTube Link 2025-02-21T18:01Z [----] followers, [---] engagements

"Sanofi - Meet the DM Drug Developers [----] Originally presented on October 3rd [----]. Sanofi presents an update on their DM program. Learn more about Sanofi at: https://www.sanofi.com/en ========================== Presenters include: Didier Rouy MD PhD Associate Global Project Head Gene Therapy Isobelle Galeon MD MSCS MPH Clinical Research Director Rare Disease Pablo Rendo MD Global Project Head gene therapy Rare Diseases portfolio Tara Hastings Patient Engagement Lead Rare Diseases ========================== Each month biotechnology pharmaceutical and academic partners large and small working"
YouTube Link 2025-10-09T16:32Z [----] followers, [---] engagements

"Avidity Biosciences - Meet the DM Drug Developers [----] Presented on March [--] [----]. Join us for a Meet the Myotonic Dystrophy Drug Developers webinar with Avidity Biosciences Don't miss this special presentation on the "Global Phase [--] HARBOR Study & Long-term MARINA-OLE Data". Learn more about Avidity Biosciences at https://www.aviditybiosciences.com/ Panelists include: + Sarah Boyce President & CEO & Member of the Board of Directors Avidity Biosciences + Li-Jung Tai MD PhD Executive Director in Clinical Development Avidity Biosciences + Kath Gallagher Senior Vice President andGlobal Program"
YouTube Link 2024-03-28T16:33Z [----] followers, [----] engagements

"Dyne Therapeutics - Meet the DM Drug Developers Presented April [--] [----]. Each month biotechnology pharmaceutical and academic partners large and small working on treatments and a cure for myotonic dystrophy will sit down with our community to share their progress and answer your questions. Learn more about Dyne Therapeutics at https://www.dyne-tx.com/ Dr. Ashish Dugar SVP and Global Head of Medical Affairs at Dyne Therapeutics will present an overview of Dynes DM1 candidate DYNE-101 including preclinical data and plans for the upcoming clinical trial. Q&A hosted by Molly White Vice President"
YouTube Link 2022-04-04T22:31Z [----] followers, [----] engagements

"Dyne Therapeutics (Part 2) - Meet the DM Drug Developers [----] Dyne Therapeutics presents updates on their DM1 program and their ongoing ACHIEVE study on Zeleciment basivarsen ("z-basivarsen" also known as DYNE-101). Learn more about Dyne Therapeutics at: https://www.dyne-tx.com/ ========================== Each month biotechnology pharmaceutical and academic partners large and small working on treatments and a cure for myotonic dystrophy will sit down with our community to share their progress and answer your questions. Find all our upcoming Meet the DM Drug Developers dates at"
YouTube Link 2025-12-17T04:24Z [----] followers, [---] engagements

"Ask-the-Expert: Life Hacks from the Myotonic Dystrophy Community Originally presented on November [--] [----]. Join us for a special Ask-the-Expert panel featuring members of the myotonic dystrophy (DM) community as they share their favorite life hacks for managing daily life with DM. Whether youre living with DM1 or DM2 caring for a loved one with congenital DM (CDM) or supporting someone as a caregiver this session will offer practical tips and creative strategies to make everyday challenges a little easier. Hear how others have adapted routines found tools that work and maintained a positive"
YouTube Link 2025-11-20T22:22Z [----] followers, [---] engagements

"Multi-Systemic and Cognitive Aspects of Myotonic Dystrophy Type [--] Presented during Myotonic's Friday Afternoon Webinar Series: https://www.myotonic.org/friday-afternoon-webinar-series This webinar will present an overview of multi systemic aspects in DM2 including an update on cognitive deficits CNS imaging techniques coping with COVID-19 and DM2 and a research update emphasizing molecular mechanisms which could assist in better prognosis of DM2. About the Presenter: Giovanni Meola MD Universit degli Studi di Milano Dr. Meola is a clinician who has been interested in the field of"
YouTube Link 2020-06-12T22:44Z [----] followers, [----] engagements

"Keeping Your Heart in Check: DM1s Impact & Care Tips - MDF [----] Conference This session focuses on the cardiac complications associated with myotonic dystrophy type [--] (DM1). Gain a deeper understanding of how DM1 affects heart function the most common heart-related issues and the best practices for self-management and care. The session also covers the latest advancements in DM1 cardiac research helping attendees stay informed about new developments. Presenter: + Daniel Cruz MD PhD UCLA Health Explore our other sessions and read about the incredible [----] MDF Conference in Indianapolis Indiana:"
YouTube Link 2025-08-28T22:27Z [----] followers, [--] engagements

"Senator Amy Klobuchar Supports the Myotonic Dystrophy Community The Myotonic Dystrophy Foundation is incredibly grateful to Senator Amy Klobuchar for supporting S.Res.772 a resolution recognizing the seriousness of myotonic dystrophy and expressing support for the designation of September [--] [----] as "International Myotonic Dystrophy Awareness Day" as well as publicly recognizing the struggles and resilience of the #myotonicdystrophy community. Together we are changing the future of myotonic dystrophy Learn more about International Myotonic Dystrophy Awareness Day and the Global Alliance for"
YouTube Link 2022-11-05T01:16Z [----] followers, [---] engagements

"Industry Updates: Day [--] - [----] MDF Annual Conference Presented on September 9th [----]. With an opening statement from Dr. Andy Berglund MDF Scientific Advisory Committee member representatives from biotechnology and pharmaceutical companies will provide updates on their drug development efforts in the DM field. Featured companies include: + Dyne Therapeutics (https://www.dyne-tx.com/) + PepGen (https://www.pepgen.com/) + Harmony Biosciences (https://www.harmonybiosciences.com/) + Rgenta Therapeutics (https://rgentatx.com/) + AMO Pharma (https://www.amo-pharma.com/) Learn more about the 2023"
YouTube Link 2023-11-28T08:07Z [----] followers, [---] engagements

"What Comes Next: Preparing for DM Clinical Trials With many potential drugs and treatments in development this session explores the different stages of the clinical trials process how COVID-19 has impacted the research process as well as the FDA review/approval process how the different therapeutic approaches might be administered as well as how people living with myotonic dystrophy can prepare now to be ready to participate in trials in the future. Presented during the Understanding DM Research and Progress Track at the MDF [----] Virtual Conference. About the presenter: Nicholas Johnson MD"
YouTube Link 2020-10-06T00:17Z [----] followers, [---] engagements

"Understanding Myotonic Dystrophy Inheritance of Myotonic Dystrophy Type [--] (DM1) The Myotonic Dystrophy Foundation is excited to release the second video in our Understanding Myotonic Dystrophy series "Understanding Myotonic Dystrophy Inheritance of Myotonic Dystrophy Type [--] (DM1)" explains how DM1 is passed down from generation to generation and highlights the importance of genetic testing. This animation is a valuable resource for individuals and families living with DM1 helping them deepen their understanding of DM raise awareness within their families and educate others about myotonic"
YouTube Link 2025-02-21T18:01Z [----] followers, [----] engagements

"DM1: What You Need to Know - [----] MDF Regional Conference in Iowa City IA Presented at the MDF [----] Regional Conference in Iowa City IA on Saturday April [--] [----] at the Iowa Memorial Union building at the University of Iowa in Iowa City IA. This session is for those new to the DM1 community and those seeking a refresher. It includes an overview of DM1 genetics symptoms self-management and working with your clinical care team to ensure the best quality of life. Speaker: Andrea Swenson MD Medical Director University of Iowa Myotonic Dystrophy Clinic Learn more about the [----] MDF Regional"
YouTube Link 2024-09-14T21:05Z [----] followers, [---] engagements

"Ask-the-Expert: Palliative Care and Myotonic Dystrophy - Living Well at Every Stage Originally presented on December [--] [----]. Join us for a special Ask the Expert session Palliative Care and DM: Living Well at Every Stage presented in partnership with Cure DM a UK charity dedicated to supporting individuals and families affected by myotonic dystrophy (DM). (https://www.curedm.co.uk/) This webinar will explore how palliative care can enhance quality of life for people living with DM and their loved ones by focusing on physical comfort emotional support and practical guidance at every stage of"
YouTube Link 2025-12-16T22:27Z [----] followers, [--] engagements

"AMO Pharma Ltd. - Industry Updates On Drug Development (2018 MDF Annual Conference) Representatives from biotech and pharma companies will provide updates on their drug development efforts in the DM field. Speaker: Joseph P. Horrigan MD AMO Pharma Ltd. PowerPoint Presentation: https://www.myotonic.org/sites/default/files/pages/files/Joseph-Horrigana_AMO-Pharma-Update_2018-Conference.pdf For more information on myotonic dystrophy visit https://www.myotonic.org"
YouTube Link 2018-10-04T18:58Z [----] followers, [---] engagements

"Industry Updates Part [--] - [----] MDF Annual Conference Representatives from biotech and pharma companies will provide updates on their drug development efforts in the DM field. Presenters include: 0:00:00 - Introduction 0:02:04 - Harmony Biosciences 0:14:16 - Avidity Biosciences 0:31:16 - Dyne Therapeutics 0:47:39 - GrittGene Therapeutics 0:56:23 - AMO Pharma Ltd. To learn more about the [----] MDF Annual Conference visit https://www.myotonic.org/2022-mdf-annual-conference For more information on myotonic dystrophy visit https://www.myotonic.org/ myotonic dystrophy industry updates drug"
YouTube Link 2022-09-15T03:18Z [----] followers, [---] engagements

"Repeat Instability & Stabilization - [----] MDF Annual Conference Repeat instability is the crux of myotonic dystrophy disease. Join three leading researchers for a panel presentation of research addressing possible opportunities for repeat stabilization. Dr. Pearson presents recent research into mouse model repeat stabilization for Huntingtons with a discussion of implications for DM. Dr. Monckton discusses somatic CTG repeat expansion in DM1 with respect to dynamics consequences and therapeutic opportunities. Dr. Bialek discusses the work of Triplet Therapeutics in utilizing ASOs and siRNAs"
YouTube Link 2021-09-29T02:48Z [----] followers, [---] engagements

"AMO Pharma - [----] Meet the DM Drug Developers Presented on July 7th [----]. Each month biotechnology pharmaceutical and academic partners large and small working on treatments and a cure for myotonic dystrophy will sit down with our community to share their progress and answer your questions. Learn more about AMO Pharma at https://www.amo-pharma.com/ Find all our upcoming Meet the DM Drug Developers dates at https://www.myotonic.org/meet-dm-drug-developers About the presenters: MICHAEL SNAPE PH.D. - CHIEF SCIENTIFIC OFFICER Dr. Snape is a neurobiologist who has spent [--] years in the"
YouTube Link 2023-07-14T22:31Z [----] followers, [---] engagements

"Day [--] Welcome & State of the Foundation - [----] MDF Annual Conference Welcome MDF leadership and Board of Directors are eager to share exciting updates about the state of Foundation International Myotonic Dystrophy Awareness Day and the MDF strategic plan. Originally presented on September 10th [----] as a main session of the [----] Virtual MDF Annual Conference. Speakers include: -Tanya Stevenson EdD -Jeremy Kelly -John Fitzpatrick -Loraine Dressler -Tom McPeek -Eric Wang PhD -Belen Esparis MD Learn more about the [----] Virtual MDF Annual Conference at"
YouTube Link 2021-09-29T02:48Z [----] followers, [---] engagements

"Ask-the-Expert: Seeing Myotonic Dystrophy Clearly Originally presented on July 25th [----]. Do you have questions for myotonic dystrophy (DM) doctors and therapists Watch our Ask-the-Expert: The Seeing DM Clearly. This features Vinod Mootha MD a Professor in the Department of Ophthalmology at UT Southwestern Medical Center. About the Presenters: Vinod Mootha MD Professor in the Department of Ophthalmology at UT Southwestern Medical Center Vinod Mootha MD is a Professor in the Department of Ophthalmology at UT Southwestern Medical Center. He earned his medical degree at the Johns Hopkins"
YouTube Link 2025-07-30T21:06Z [----] followers, [---] engagements

"Dyne Therapeutics - Meet the DM Drug Developers [----] Presented April [--] [----]. Each month biotechnology pharmaceutical and academic partners large and small working on treatments and a cure for myotonic dystrophy will sit down with our community to share their progress and answer your questions. Learn more about Dyne Therapeutics at https://www.dyne-tx.com/ Dr. Ashish Dugar Chief Medical Affairs Officer at Dyne Therapeutics presents on the ACHIEVE study and Dynes investigational medicine DYNE-101. Q&A hosted by Molly White Global Head of Patient Advocacy. Find all our upcoming Meet the DM Drug"
YouTube Link 2023-04-19T00:15Z [----] followers, [---] engagements

"Dyne Therapeutics (July) - Meet the DM Drug Developers [----] Presented on July [--] [----]. Dr. Ashish Dugar Chief Medical Affairs Officer at Dyne Therapeutics presents on new DYNE-101 ACHIEVE Clinical Trial Data. Learn more about Dyne Therapeutics at https://www.dyne-tx.com/ Each month biotechnology pharmaceutical and academic partners large and small working on treatments and a cure for myotonic dystrophy will sit down with our community to share their progress and answer your questions. Find all our upcoming Meet the DM Drug Developers dates at https://www.myotonic.org/meet-dm-drug-developers"
YouTube Link 2024-07-13T01:27Z [----] followers, [---] engagements

"Industry Updates Part [--] - [----] MDF Annual Conference Representatives from biotech and pharma companies will provide updates on their drug development efforts in the DM field. Originally presented on September [--] [----]. Speakers Include: -Jane Larkindale PhD PepgGen: https://pepgen.com/ -Dietrich A. Stephan PhD NeuBase Therapeutics: https://www.neubasetherapeutics.com/ -Beatriz Llamusi PhD ARTHEx biotech: https://arthexbiotech.com/ -Valerie Cullen PhD Expansion Therapeutics: https://www.expansionrx.com/ Learn more about the [----] Virtual MDF Annual Conference at"
YouTube Link 2021-09-29T02:48Z [----] followers, [---] engagements

"International Myotonic Dystrophy Awareness Day - Special Program Join us for a special video program honoring and celebrating our global DM community Hear from some of MDF's volunteer advocates meet members of the Global Alliance see special messages from Senators Tim Kaine and Amy Klobuchar listen to a performance by singer-songwriter Eric Hutchinson and get inspired to spread DM awareness Visit https://www.myotonic.org/international-dm-day for more ways to get involved. #myotonicDystrophy #InternationalMyotonicDystrophyAwarenessDay #myotonicDystrophyAwareness Global Alliance Members:"
YouTube Link 2021-09-15T19:00Z [----] followers, [----] engagements

"Young Investigators Workshop Career Panel - [----] MDF Conference Designed for young researchers this panel explores myotonic dystrophy (DM) careers in academia industry non-profit government and more. Presenters: + Johanna Hamel MD Assistant Professor of Neurology Pathology and Laboratory Medicine University of Rochester + Lukasz Sznadjer PhD Assistant Professor University of Nevada Las Vegas + Jana Jenquin PhD Senior Scientist Novartis + Ranjan Batra PhD Vice President of Discovery Research & Translation Lexeo Therapeutics + Andy Rohrwasser PhD MBA MDF Chief Scientific Officer Explore our"
YouTube Link 2025-08-28T22:05Z [----] followers, [--] engagements

"Meet the Global Alliance for Myotonic Dystrophy Awareness A Global Alliance of myotonic dystrophy-focused organizations have united for the first time to declare and promote International Myotonic Dystrophy Awareness Day to be observed each September 15th. There are now [--] organizations in the Global Alliance working in tandem to increase DM awareness around the world. Meet a few of the Global Alliance members and hear why raising myotonic dystrophy awareness is important to them. Visit https://www.myotonic.org/international-dm-day for more information about the Global Alliance and"
YouTube Link 2021-09-16T17:27Z [----] followers, [---] engagements

"Industry Updates Saturday Representatives from biotech and pharma companies provide updates on their drug development efforts in the DM field including companies new to the MDF Annual Conference. This session includes presentations by: + Syros Pharmaceuticals + AMO Pharma + Harmony Biosciences About the presenters: William Jacobson PhD Senior Director Clinical Development Harmony Biosciences Ibraheem Mahmood Chief Executive Officer AMO Pharma John Carulli PhD Vice President Biology Syros Find resources and learn more about myotonic dystrophy at https://www.myotonic.org/"
YouTube Link 2020-10-06T00:17Z [----] followers, [---] engagements

"Food Preparation for the DM Community Presented during Myotonic's Friday Afternoon Webinar Series: https://www.myotonic.org/friday-afternoon-webinar-series This webinar will cover a basic understanding of adult nutrition dysphagia (swallowing difficulties) and food preparation. Dr. Krongold (adult-onset DM1) and her partner Jessica will demonstrate the tools needed to prepare three simple nutritious meals for people with chewing and/or swallowing difficulties. About the Presenter: Leslie Krongold EdD Dr. Leslie Krongold was diagnosed with adult-onset DM1 in [----]. She joined an MDA support"
YouTube Link 2020-05-02T16:19Z [----] followers, [---] engagements

"Pharma Day with Euro-DyMA - [----] Myotonic Dystrophy Foundation Conference The 5th Edition of Pharma Day was presented in partnership by Euro-DyMA (European Dystrophia Myotonica Association) and the Myotonic Dystrophy Foundation (MDF) as a part of the Professional Track at the [----] MDF Conference on May 1st [----]. Learn more about Euro-DyMA at https://euro-dyma.eu/ Learn more about MDF & the [----] MDF Conference at https://www.myotonic.org/2025-mdf-annual-conference This brings pharmaceutical innovators researchers clinicians and patient organizations together for an afternoon of presentations"
YouTube Link 2025-06-16T18:57Z [----] followers, [---] engagements

"DM2 Research Update Dr. Matt Disney PhD of the Scripps Research Institute and Dr. John Day MD PhD of Stanford University provide an overview of the DM2 disease mechanism and using this explanation describe how compounds can be designed as potential therapeutics for this disease. Want more information on DM: http://www.myotonic.org Newly Diagnosed Start Here: http://www.myotonic.org/what-dm/start-here Find a Support Group in your area: http://www.myotonic.org/find-support Find DM Physicians and Specialists: http://www.myotonic.org/find-a-doctor-map Join the Registry:"
YouTube Link 2014-03-27T23:43Z [----] followers, [----] engagements

"Industry Updates and Q&A (2019 Myotonic Annual Conference) Representatives from biotech and pharma companies will provide updates on their drug development efforts in the DM field including companies new to the Myotonic Annual Conference. The industry updates are followed by the Q&A session where questions submitted throughout the conference are answered by a panel of DM Professionals. 0:01:00 - Matt Disney PhD. Expansion Therapeutics (https://www.myotonic.org/sites/default/files/pages/program/Disney-Expansion-2019.pptx) 0:15:20 - Art Levin PhD Avidity Biosciences 0:27:00 - Laury Mignon PhD"
YouTube Link 2019-10-03T21:17Z [----] followers, [---] engagements

"Ask-the-Expert: Reproductive Health & Myotonic Dystrophy Do you have questions for myotonic dystrophy (DM) doctors and therapists Join Dr. Lorelei Thornburg Obstetrician/Gynecologist and Dr. Johanna Hamel Assistant Professor in Neurology Pathology and Laboratory Medicine from the University of Rochester for an "Ask the Expert" webinar on reproductive health and DM All members of the DM community are welcome to attend and are encouraged to ask questions in advance using this registration form or through the chat during the live Q&A Find all our upcoming Ask the Expert dates and previously"
YouTube Link 2024-11-19T23:38Z [----] followers, [---] engagements

"Expansion Therapeutics - Meet the DM Drug Developers Presented on April 2nd [----]. Each month biotechnology pharmaceutical and academic partners large and small working on treatments and a cure for myotonic dystrophy will sit down with our community to share their progress and answer your questions. Learn more about Expansion Therapeutics: https://www.expansionrx.com/ Find all our upcoming Meet the DM Drug Developers dates: https://www.myotonic.org/meet-dm-drug-developers For more information on myotonic dystrophy visit https://www.myotonic.org/ About the Presenters Renato Skerlj PhD Chief"
YouTube Link 2021-04-03T17:43Z [----] followers, [---] engagements

"Avidity Biosciences Topline Data - [----] Meet the DM Drug Developers Each month biotechnology pharmaceutical and academic partners large and small working on treatments and a cure for myotonic dystrophy sit down with our community to share their progress and answer your questions. Sarah Boyce Avidity CEO Dr. Steve Hughes Avidity CMO and Dr. Nicholas Johnson MARINA Principal Investigator present topline data from the MARINA Phase 1/2 clinical trial evaluating AOC [----] for adults with myotonic dystrophy type [--] (DM1). Learn more about Avidity Biosciences at https://www.aviditybiosciences.com/"
YouTube Link 2023-05-11T18:24Z [----] followers, [----] engagements

"Lupin Neurosciences - Meet the DM Drug Developers Presented on June 4th [----]. Each month biotechnology pharmaceutical and academic partners large and small working on treatments and a cure for myotonic dystrophy will sit down with our community to share their progress and answer your questions. Speakers include: Dr. Alla Zosulya-Weidenfeller - Director Medical Affairs Neurology EMEA Dr. Gregory Kaufman Senior Vice President Global Clinical and Medical Affairs Specialty Mariska van Aswegen Vice President Neurology EMEA Learn more about Lupin Neurosciences: https://lupin-neurosciences.com/ Find"
YouTube Link 2021-06-10T02:31Z [----] followers, [---] engagements

"Harmony Biosciences [----] - Meet the DM Drug Developers Each month biotechnology pharmaceutical and academic partners large and small working on treatments and a cure for myotonic dystrophy will sit down with our community to share their progress and answer your questions. Learn more about Harmony Biosciences at https://www.harmonybiosciences.com/ Learn more about their ongoing clinical trial "Safety and Efficacy of Pitolisant on Excessive Daytime Sleepiness and Other Non-Muscular Symptoms in Patients With Myotonic Dystrophy Type 1" at https://www.clinicaltrials.gov/ct2/show/NCT04886518"
YouTube Link 2022-07-23T02:58Z [----] followers, [---] engagements

"Industry Updates Friday Representatives from biotech and pharma companies will provide updates on their drug development efforts in the DM field: + Avidity Biosciences + Ionis Pharmaceuticals + Dyne Therapeutics + NeuBase Therapeutics About the presenters: Kristina Bowyer Ionis Pharmaceuticals Vice President Patient Advocacy Art Levin PhD Avidity Biosciences Chief Scientific Officer Dietrich A. Stephan PhD NeuBase Therapeutics Chief Executive Officer Romesh Subramanian PhD Dyne Therapeutics Chief Scientific Officer Find resources and learn more about myotonic dystrophy at"
YouTube Link 2020-10-06T00:17Z [----] followers, [---] engagements

"Treatment & Cure: Where Are We Now There are more efforts now than ever in the biotechnology and pharmaceutical industries to bring medicines to our community. This presentation outlines various approaches that are under development to treat myotonic dystrophy. You will learn about strategies being taken and progress that has been made in the recent past. You will also learn about potential hurdles that stand in the way of delivering effective therapeutics to DM patients and how scientists and drug developers are working to overcome these hurdles. It is an exciting time for our community and"
YouTube Link 2020-10-06T00:17Z [----] followers, [---] engagements

"Industry Updates Part [--] - [----] MDF Annual Conference Representatives from biotech and pharma companies will provide updates on their drug development efforts in the DM field. Originally presented on Septebmer 10th [----]. Speakers include: - Ibraheem Mahmood AMO Pharma: https://www.amo-pharma.com/ - Jeffrey M Dayno MD & William Jacobson PhD Harmony Biosciences: https://www.harmonybiosciences.com/ - Elizabeth "Lisa" Ackermann PhD Avidity Biosciences: https://www.aviditybiosciences.com/ - Ashish Dugar PhD Dyne Therapeutics: https://www.dyne-tx.com/ Learn more about the [----] Virtual MDF Annual"
YouTube Link 2021-09-29T02:48Z [----] followers, [---] engagements

"Advocating for Myotonic Dystrophy Research - International Myotonic Dystrophy Awareness Day Join MDF on International Myotonic Dystrophy Awareness Day on September 15th to learn how advocates can increase #myotonicDystrophy (DM) awareness grow DM research funding and advance policies to accelerate the approval of drugs to treat and eventually cure DM. As Congress advances spending legislation that includes biomedical research funding we will be closely following these proceedings and as we identify opportunities for MDF advocates to influence this legislation we will be urging advocates to"
YouTube Link 2022-09-15T22:26Z [----] followers, [---] engagements

"Industry Updates: Day [--] - [----] MDF Annual Conference Presented on September 8th [----]. With an opening statement from Dr. Andy Berglund MDF Scientific Advisory Committee member representatives from biotechnology and pharmaceutical companies will provide updates on their drug development efforts in the DM field. Featured companies include: + Avidity Biosciences (https://www.aviditybiosciences.com/) + Juvena Therapeutics (https://www.juvenatherapeutics.com/) + Sanofi (https://www.sanofi.com/) + ARTHEx Biotech (https://www.arthexbiotech.com/) Learn more about the [----] MDF Annual Conference at"
YouTube Link 2023-11-28T07:36Z [----] followers, [---] engagements

"Dyne Therapeutics - Meet the DM Drug Developers Dynes Approach to Targeting DM1 Presenters include: Josh Brumm Chief Executive Officer; Romesh Subramanian PhD Chief Scientific Officer; Chris Mix MD Senior Vice President Clinical Development; and Molly White Vice President Medical Communications & Advocacy. Learn more about Dyne Therapeutics at www.dyne-tx.com Each month biotechnology pharmaceutical and academic partners large and small working on treatments and a cure for myotonic dystrophy will sit down with our community to share their progress and answer your questions. Find all our"
YouTube Link 2021-02-10T02:50Z [----] followers, [---] engagements

"Advocacy for DM Research & Funding Advocating for myotonic dystrophy research resources and inclusion. Through this panel discussion you will: [--]. Learn about the past present and future of MDFs research advocacy plans and how you can help increase federal funding for DM research. [--]. Get an insider perspective from a congressional staff person on what works and doesnt work when you lobby Congress for increased research funding and other health care priorities. [--]. Understand from a DM consumer reviewer how federal agencies like the Department of Defense PRMRP allocate research funds to award"
YouTube Link 2020-10-06T00:17Z [----] followers, [---] engagements

"Dyne Therapeutics - Meet the DM Drug Developers [----] Presented on January [--] [----]. Dr. Ashish Dugar Chief Medical Affairs Officer at Dyne Therapeutics presents on "Achieving the Promise of FORCE to Deliver for Patients". Learn more about Dyne Therapeutics at https://www.dyne-tx.com/ Each month biotechnology pharmaceutical and academic partners large and small working on treatments and a cure for myotonic dystrophy will sit down with our community to share their progress and answer your questions. Find all our upcoming Meet the DM Drug Developers dates at"
YouTube Link 2024-02-01T01:54Z [----] followers, [---] engagements

"Industry Updates - [----] MDF Regional Conference in Seattle WA Presented at the [----] MDF Regional Conference on Saturday June [--] [----] at the Westin Seattle in Seattle WA. Representatives from biotechnology and pharmaceutical companies will provide updates on their drug development efforts in the DM field. Representatives: Avidity Biosciences Dyne Therapeutics ARTHEx Biotech Juvena Therapeutics AMO Pharma PepGen Learn more about the [----] MDF Regional Conference in in Seattle WA at: https://www.myotonic.org/mdf-regional-conference-seattle-wa Chapters: 0:00:00 Welcome & DM Basics 0:06:46 Avidity"
YouTube Link 2024-09-14T21:05Z [----] followers, [---] engagements

"Biogen and Ionis Pharmaceuticals - Meet the DM Drug Developers Presented on May 7th [----]. Each month biotechnology pharmaceutical and academic partners large and small working on treatments and a cure for myotonic dystrophy will sit down with our community to share their progress and answer your questions. Learn more about Biogen at https://www.biogen.com/en_us/home.html Learn more about Ionis Pharmaceuticals at https://www.ionispharma.com/ Find all our upcoming Meet the DM Drug Developers dates: https://www.myotonic.org/meet-dm-drug. For more information on myotonic dystrophy visit"
YouTube Link 2021-05-08T01:36Z [----] followers, [---] engagements

"Avidity Biosciences #2 - [----] Meet the DM Drug Developers Presented on August 4th [----]. Each month biotechnology pharmaceutical and academic partners large and small working on treatments and a cure for myotonic dystrophy sit down with our community to share their progress and answer your questions. Learn more about Avidity Biosciences at https://www.aviditybiosciences.com/ Presenters include: + Sarah Boyce President & CEO + Li-Jung Tai MD PhD Executive Director Clinical Development + Steve Hughes MD Chief Medical Officer + Kristi Clark Vice President Clinical Operations + Luis Estevez Senior"
YouTube Link 2023-08-07T19:01Z [----] followers, [---] engagements

"Progress & Possibilities for DM Research - [----] MDF Conference This session explores gene discoveries gain of function RNA and the personalized DM therapies of tomorrow the power of unified registries and interventional strategies targeting the cause of DM. Presenters: + Maurice S. Swanson PhD Professor and Associate Director Department of Molecular Genetics and Microbiology Center for NeuroGenetics and the Genetics Institute University of Florida + Guillaume Bassez MD PhD Institut de Myologie MDF Medical and Scientific Advisory Committee + Antoine Mangin PhD Cardiff University UK Dementia"
YouTube Link 2025-08-28T19:49Z [----] followers, [--] engagements

"Highlighting New Research - [----] MDF Conference This session highlights new research in the myotonic dystrophy field. Dr. Belinda Pinto discusses new research strategies aiming to understand CNS presentations and the common problem of daytime sleepiness. Dr. Paloma Gonzalez-Perez discusses new research strategies emphasizing the importance of exercise in DM2. Presenters + Belinda Pinto PhD Assistant Scientist University of Florida + Paloma Gonzalez-Perez MD PhD Massachusetts General Hospital Explore our other sessions and read about the incredible [----] MDF Conference in Indianapolis Indiana:"
YouTube Link 2025-08-28T21:39Z [----] followers, [--] engagements

"Advocacy for DM Research Funding - [----] International Myotonic Dystrophy Awareness Day In this webinar MDF' Washington D.C. based advocacy consultant Kevin Brennan speaks on the status of MDF research funding awareness & US advocacy priorities and calls to action. Learn more about MDF's ongoing advocacy efforts at: https://www.myotonic.org/myotonic-dystrophy-advocacy Learn more about myotonic dystrophy and the Myotonic Dystrophy Foundation (MDF) at https://www.myotonic.org/ Chapters: 0:00:00 - Introduction 0:03:59 - Intro to US Advocacy & Federal Funding for DM Research 0:09:36 - Peer"
YouTube Link 2025-10-09T16:43Z [----] followers, [--] engagements

"PepGen - Meet the DM Drug Developers [----] Presented on August [--] [----]. PepGen presents myotonic dystrophy program including PGN-EDODM1 program and nonclinical data and an overview of the FREEDOM-DM1 trial. find the latest updates to the PepGen trial including trial site recruiting status on ClinicalTrials.Gov at https://clinicaltrials.gov/study/NCT06204809term=pepgen&cond=myotonic%20dystrophy&rank=1 Learn more about PepGen at https://www.pepgen.com/ ========================== Presenters include: - Jane Larkindale DPhil Vice President of Clinical Science PepGen - Alayna Tress MPH Director of"
YouTube Link 2024-08-16T19:59Z [----] followers, [---] engagements

"Ask-the-Expert: The Emotional Journey of Myotonic Dystrophy Originally presented on June 20th [----]. Do you have questions for myotonic dystrophy (DM) doctors and therapists Watch our Ask-the-Expert: The Emotinal Journey of DM. This features Missy Dixon PhD a Licensed Psychologist and Assistant Professor of Pediatrics at the University of Utah. About the Presenters: Missy Dixon PhD Licensed Psychologist and Assistant Professor of Pediatrics Missy Dixon PhD is a Licensed Psychologist and Assistant Professor of Pediatrics at the University of Utah. She specializes in mental health care for"
YouTube Link 2025-06-30T10:00Z [----] followers, [---] engagements

"What's Happening with DM2 Research Learn about the current developments in DM2 research. Moderated by Dr. Johanna Hamel of University of Rochester. Panelists will include Dr. Paloma Gonzalez-Perez of the Massachusetts General Hospital and MDF Research Fellows Dr. Raphael Benhamou of Scripps Research Institute and Dr. Jana Jenquin of University of Florida. Presented during the Understanding DM Research and Progress Track at the MDF [----] Virtual Conference. About the presenters: Johanna Hamel MD Dr. Hamel is a neuromuscular specialist and assistant professor of neurology pathology and"
YouTube Link 2020-10-06T00:17Z [----] followers, [---] engagements

"Insights Into Muscle Pathology: Imaging Analysis & Clinical Endpoints in Myotonic Dystrophy Type [--] Presented on September 9th [----]. Araya Puwanant MD MS Wake Forest University School of Medicine Winston Salem North Carolina United States Myotonic dystrophy type [--] (DM2) an autosomal dominant muscular dystrophy is characterized by late-onset progressive proximal muscle weakness myotonia and multisystem features. DM2 results from a CCTG repeat expansion in the cellular nucleic acid binding protein (CNBP) gene where the RNA gain-of-function is considered the primary mechanism that leads to"
YouTube Link 2023-12-04T23:19Z [----] followers, [---] engagements

"Young Investigators: Introduction to the DM Funding Landscape [----] This exclusive Pre-Conference Webinar is designed to help Young Investigators identify funding pathways avoid common pitfalls and gain insider tips on securing grants and fellowships. Presented on March [--] [----]. Agenda Highlights: + Overview of Funding Pathways for pre-doctoral postdoctoral and K99 applicants. + Best Practices & Strategies for securing grants and fellowships. + Common Pitfalls to Avoid in funding applications. + Exclusive Insights into new MDF grant opportunities. + Live Q&A Get your funding questions answered"
YouTube Link 2025-03-21T17:37Z [----] followers, [--] engagements

"Securing Tomorrow: Financial Strategies & Planning for the Future - [----] MDF Conference This session addresses the financial challenges and future planning needs of individuals with myotonic dystrophy type [--] & type [--] (DM1 & DM2) and their families. Topics include healthcare costs creating a will and strategies for reducing financial stress while planning for long-term care and legacy planning. Presenter: + Carol Applegate JD RN Indiana University Health Explore our other sessions and read about the incredible [----] MDF Conference in Indianapolis Indiana:"
YouTube Link 2025-08-28T22:55Z [----] followers, [--] engagements

"Ask-the-Expert: Genetic Testing & Counseling for Myotonic Dystrophy Do you have questions for myotonic dystrophy (DM) doctors Join certified genetic counselor Shawna Feeley MS CGC from the Seattle Children's Hospital for an "Ask the Expert" webinar on DM and Genetic Testing & Counseling ========== About Our Ask-the-Expert Webinar Series After the success of the Stump-the-Doctor session at the [----] Virtual MDF Conference MDF created a series using the same format to connect families and DM experts. Find all our upcoming Ask the Expert dates and previously recorded sessions at"
YouTube Link 2024-10-09T18:26Z [----] followers, [---] engagements

"Applying for Myotonic Dystrophy Research Funding '25: Peer Reviewed Medical Research Program (PRMRP) The Myotonic Dystrophy Foundation (MDF) is pleased to announce that Kathryn J. Argue PhD Interim Program Manager Peer Reviewed Medical Research Program (PRMRP) at the U.S. Armys Congressionally Directed Medical Research Programs (CDMRP) will lead an informative webinar briefly explaining the programs history and purpose followed by a discussion on how researchers can apply for $150 million in awards under PRMRP as part of the fiscal year [----] review cycle."
YouTube Link 2025-05-29T16:27Z [----] followers, [---] engagements

"Living Better with DM Tools & Services of Occupational Therapy & Home Health - [----] MDF Conference This session highlights how occupational therapy (OT) and home health services can improve the daily lives of those living with myotonic dystrophy type [--] or type [--] (DM1 or DM2). Experts discuss common mobility and self-care challenges and offer practical solutions through adaptive equipment and environmental modifications. Presenters: + Pam Glazener OTR ATP Houston Methodist + Wendy E. Schell PT DPT MS CSRS Houston Methodist Explore our other sessions and read about the incredible [----] MDF"
YouTube Link 2025-08-28T22:32Z [----] followers, [--] engagements

"Thank You for Your Support of the Myotonic Dystrophy Community Thank you to all of our generous donors for partnering with MDF in [----] to advance our mission of Community Care and a Cure Your support will help us make [----] the best year yet for the DM community. If you havent yet made your year-end gift to MDF theres still time https://give.myotonic.org/campaign/622795/donate Learn more about the Myotonic Dystrophy Foundation and their DM specific resources and support programs at https://www.myotonic.org/"
YouTube Link 2024-12-31T14:15Z [----] followers, [---] engagements

"Nourishing Solutions: Managing Dietary Needs and Swallowing with DM - [----] MDF Conference In this session experts discuss how myotonic dystrophy type [--] & type [--] (DM1 & DM2) impact nutrition and swallowing. Learn about the latest research on these issues and gain practical advice on managing symptoms through dietary planning and adaptive tools that can improve quality of life. Presenters: + Carolyn Martinez M.A. CCC-SLP Houston Methodist + Anna Miller MS RD LD Houston Methodist Explore our other sessions and read about the incredible [----] MDF Conference in Indianapolis Indiana:"
YouTube Link 2025-08-28T23:18Z [----] followers, [--] engagements

"DM2 What You Need to Know - [----] MDF Regional Conference in Boston MA Presented at the MDF [----] Regional Conference in Boston MA on Saturday April [--] [----] at the Le Mridien Boston Cambridge hotel in Boston MA. 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 provides an overview of clinical trials and help attendees think about how to prepare for upcoming trials and studies. Speaker: Seward Rutkove MD Department of Neurology Beth Israel"
YouTube Link 2024-09-14T21:05Z [----] followers, [---] engagements

"Young Investigators Poster Presentation Showcase - [----] MDF Conference A fast-paced session where young investigators present their groundbreaking research offering a glimpse into the future of myotonic dystrophy (DM) studies. Moderator: + Tom Cooper MD Baylor College of Medicine MDF Medical and Scientific Advisory Committee Presenters: + Bethlehem Bekele PhD + Mackenzie Davenport PhD + Emily Davey-Osuch + Missy Dixon MS PhD + Tatiana Koike + Jiss Maria Louis + Diana A. Madrid MS + Larissa Nitschke PhD + Wenhan Zhang + Laura Tufano MD Explore our other sessions and read about the incredible"
YouTube Link 2025-08-28T22:01Z [----] followers, [--] engagements

"Mind Matters: Navigating Cognitive and Memory Challenges in DM2 - [----] MDF Conference This session delves into the cognitive challenges often faced by individuals with myotonic dystrophy type [--] (DM2) focusing on issues such as memory loss and executive function difficulties. Learn about the latest research on DM2s cognitive impact and practical techniques to help manage these symptoms in daily life. Presenter: + Araya Puwanant MD Wake Forest University School of Medicine Explore our other sessions and read about the incredible [----] MDF Conference in Indianapolis Indiana:"
YouTube Link 2025-08-28T23:24Z [----] followers, [---] engagements

"Your Guide to Clinical Trials: From Phases to Participation - [----] MDF Conference This session provides an overview of the clinical trial process helping attendees understand what to expect and how to prepare. It covers the different phases of trials participant experiences and key dos and donts. Attendees will leave with the knowledge needed to make informed decisions about myotonic dystrophy trial participation. Presenter: + Seward B. Rutkove MD Beth Israel Deaconess Center Explore our other sessions and read about the incredible [----] MDF Conference in Indianapolis Indiana:"
YouTube Link 2025-08-28T23:14Z [----] followers, [--] engagements

"Finding Relief: Exploring Medications & Tools for Managing Pain in DM2 - [----] MDF Conference This session addresses pain commonly experienced by people with myotonic dystrophy type [--] (DM2). Learn about both pharmacological and non-pharmacological pain management options with a focus on physical therapy occupational therapy and lifestyle modifications as well as pain relief medications. Presenters: + Laurie Gutmann MD Indiana University Health + Shashank J. Dave DO Indiana University Health Explore our other sessions and read about the incredible [----] MDF Conference in Indianapolis Indiana:"
YouTube Link 2025-08-28T23:10Z [----] followers, [--] engagements

"Building Resilience: Family Dynamics & Support in the DM Journey - [----] MDF Conference This session examines how Myotonic Dystrophy (DM) affects family relationships focusing on the emotional and logistical challenges caregivers face. Learn strategies for maintaining healthy family dynamics fostering open communication and providing effective support to loved ones living with DM. Presenter: + Brad Thompson The HALI Project Explore our other sessions and read about the incredible [----] MDF Conference in Indianapolis Indiana: https://www.myotonic.org/over-700-people-attend-2025-mdf-conference"
YouTube Link 2025-08-28T22:57Z [----] followers, [--] engagements

"Ask-the-Expert: Myotonic Dystrophy and the Brain Originally presented on July [--] [----]. Do you have questions for DM doctors and therapists Join Dr. Faisal Fecto MD PhD from the Stanford University School of Medicine for an Ask-the-Expert session on myotonic dystrophy and the brain. After the success of the Stump-the-Doctor session at the [----] Virtual MDF Conference MDF has created a series using the same format to connect families and DM experts. Find all our upcoming Ask-the-Expert question sessions at https://www.myotonic.org/ask-expert-series You can find the care recommednations"
YouTube Link 2021-07-17T02:16Z [----] followers, [---] engagements

"Resistance Training - [----] Myotonic Dystrophy In Motion Awareness Month Each Monday in July [----] MDF featured a movement expert exploring one of the Pillars of Movement from MDFs Exercise Guide for People Living with DM. These 30-minute sessions are designed to be accessible and adaptablewhether youre just getting started or looking to enhance your regular routine. ========== Presented on July [--] [----] Resistance Training Led by Tina Duong MPT PhD This session will focus on strength training using resistive exercises. You can follow along with weights elastic bands or everyday household"
YouTube Link 2025-10-09T16:43Z [----] followers, [--] engagements

"State of the Foundation - [----] Myotonic Dystrophy Foundation Conference MDF leadership shares exciting updates about the Foundation International Myotonic Dystrophy Awareness Day and discuss progress in the field of DM. Presenters include: + Tanya Stevenson EdD MPH Chief Executive Officer + Mindy Buchanan Director of Programs + Andy Rohrwasser PhD MBA Chief Scientific Officer Explore our other sessions and read about the incredible [----] MDF Conference in Indianapolis Indiana at https://www.myotonic.org/over-700-people-attend-2025-mdf-conference Learn more about myotonic dystrophy and the"
YouTube Link 2025-06-26T23:01Z [----] followers, [--] engagements

"Vision & Eye Health (2014 MDF Annual Conference) Todd Goodglick MD of Washington Eye Physicians discusses common ophthalmological issues resulting from myotonic dystrophy and what can be done to address these symptoms. Want more information on DM: http://www.myotonic.org Newly Diagnosed Start Here: http://www.myotonic.org/what-dm/start-here Find a Support Group in your area: http://www.myotonic.org/find-support Find DM Physicians and Specialists: http://www.myotonic.org/find-a-doctor-map Join the Registry: https://myotonicregistry.patientcrossroads.org/ Donate for Care and a Cure:"
YouTube Link 2014-09-26T01:16Z [----] followers, [---] engagements

"Genomics Unleashed Insights & Implications - [----] MDF Conference The causal repeats and interactions with modifier loci: Lessons and emerging knowledge from other repeat expansion diseases. Presented by: + Darren Monckton PhD University of Glasgow MDF Medical and Scientific Advisory Committee Explore our other sessions and read about the incredible [----] MDF Conference in Indianapolis Indiana: https://www.myotonic.org/over-700-people-attend-2025-mdf-conference Learn more about myotonic dystrophy and the Myotonic Dystrophy Foundation (MDF) at https://www.myotonic.org/ Chapters: 0:00:00 -"
YouTube Link 2025-08-28T20:26Z [----] followers, [--] engagements

"Understanding the Foundations of DM Research In this presentation you will learn about many of the key scientific discoveries that have allowed researchers clinicians and the biotechnology and pharmaceutical industries to develop therapeutic strategies for myotonic dystrophy. You will learn about the identification of the mutations in the genes that cause DM1 and DM2 and how understanding the mechanism through which these mutations cause DM. You will learn how the mutations can change over time in a person and why individuals with DM have such a wide range of symptoms. This foundation of DM"
YouTube Link 2020-10-06T00:17Z [----] followers, [---] engagements

"Stump the Doctor: Exercise for DM - [----] Myotonic Dystrophy In Motion Awareness Month Presented on July [--] [----] This session moderated by Dr. Andy Rohrwasser MDF Chief Scientific Officer discusses the role of exercise in myotonic dystrophy. He is be joined by Movement Committee Member Donovan Lott PhD DPT and cardiologist Matt Wheeler MD to answer your questions and share the latest research on how movement supports muscle health and long-term well-being in people with DM. ========== Learn more about the Myotonic Dystrophy In Motion Awareness Month: https://www.myotonic.org/in-motion MDFs"
YouTube Link 2025-10-09T16:43Z [----] followers, [---] engagements

"Pat Cornell's 125k+ Mile Motorcycle Ride for #MyotonicDystrophy featured on Astound TV 🏍 One man. One bike. One historic mission to fight myotonic dystrophy. 💸 Support his mission for myotonic dystrophy families: https://give.myotonic.org/Pat125 🚨 [---] days. [------] miles. One man on a mission to fight a rare disease on two wheels. 👀 Watch this if you love motorcycles believe in grassroots change or want to support families facing rare disease. 💚 If this story moves you please like share and comment to help raise awareness. Every click gets us one step closer to a cure. ===== 🏍 Pat"
YouTube Link 2025-06-14T03:06Z [----] followers, [----] engagements

"State of DM1 Research & Ways to Engage - [----] MDF Annual Conference Myotonic dystrophy type [--] (DM1) is a complex disease caused by a rare genetic mutation which can affect many systems of the body producing symptoms that can vary considerably in type and degree from person to person. Learn about the broad range of basic science studies clinical trials and other research approaches that are currently being explored to reduce the burden of DM1 for individuals and families. Originally presented on September [--] [----]. Learn more about the [----] Virtual MDF Annual Conference at"
YouTube Link 2021-09-29T02:48Z [----] followers, [---] engagements

"Advancing the Cure: How MDF Drives Research in Myotonic Dystrophy Myotonic dystrophy (DM) research progress and hope see how MDF is helping drive the path toward treatments and a cure. What does progress toward a cure look like for the DM community For many families it means seeing real movement in science new clinical trials and researchers industry partners and advocates working together with one shared goal. In this video youll hear from individuals caregivers clinicians and researchers who have watched the field transformfrom early laboratory studies to a growing pipeline of potential"
YouTube Link 2025-12-06T00:58Z [----] followers, [---] engagements

"Finding Community: How MDF Connects Families Living with Myotonic Dystrophy Myotonic dystrophy (DM) community connection and support see how MDF helps families find belonging and understanding. What does community mean for someone navigating myotonic dystrophy (DM) For many it means finally finding people who understandpeople who share the journey and offer support without judgment. In this video individuals and caregivers describe years of feeling isolated before connecting with others through MDF conferences support groups and community programs. Youll hear how finding people who get it"
YouTube Link 2025-12-06T00:58Z [----] followers, [---] engagements

"Genetics Unveiled: DM2 Understanding Testing & Counseling - MDF [----] Conference This session explores the importance of genetic testing and counseling for individuals and families affected by myotonic dystrophy type [--] (DM2). Learn about the testing process the role of genetic counselors the importance of testing for registries and natural history studies and planning for future generations. Presenter: + Gabe Kringlen MS LGC University of Iowa Healthcare Explore our other sessions and read about the incredible [----] MDF Conference in Indianapolis Indiana:"
YouTube Link 2025-08-28T22:40Z [----] followers, [--] engagements

"Avidity Biosciences - Meet the DM Drug Developers Each month biotechnology pharmaceutical and academic partners large and small working on treatments and a cure for myotonic dystrophy will sit down with our community to share their progress and answer your questions. Learn more about Avidity Biosciences at https://www.aviditybiosciences.com/ Avidity Biosciences recently announced they have received clearance from the FDA to proceed with the Phase 1/2 MARINA trial of AOC [----] in adults with DM1. Read the full press release at"
YouTube Link 2021-08-09T16:52Z [----] followers, [---] engagements

"Understanding DM2 - [----] MDF Annual Conference Presented by Thurman Wheeler MD of Massachusetts General Hospital. Learn 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. To learn more about the [----] MDF Annual Conference visit https://www.myotonic.org/2022-mdf-annual-conference For more information on myotonic dystrophy visit https://www.myotonic.org/"
YouTube Link 2022-11-04T04:09Z [----] followers, [---] engagements

"DM1: Disease Development Symptoms & Management - [----] MDF Annual Conference Learn about genetic factors causing DM1 the different body systems affected the most common symptoms and how best to manage and provide care for the disease from a leading expert. Appropriate for newly diagnosed and those living with DM1 for many years. Learn more about the [----] Virtual MDF Annual Conference at https://www.myotonic.org/2021-virtual-mdf-annual-conference Learn more about #myotonicDystrophy at https://www.myotonic.org/myotonic-dystrophy-glance Watch all the [----] MDF Annual Conference Sessions at"
YouTube Link 2021-09-29T02:48Z [----] followers, [----] engagements

"Treatment Options for Pain This webinar discusses various pharmocological and non-pharmacological treatments for muscle chest and abdominal pain often experienced by persons with DM1 or DM2. It is presented by Dr. Tetsuo Ashizawa MD Professor and Director of the McKnight Brain Institute at the University of Florida College of Medicine. Dr. Ashizawa is a member of the Myotonic Dystrophy Foundation's Medical and Scientific Advisory Committee and has been researching muscular dystrophies since the 1970's. Want more information on DM: http://www.myotonic.org Newly Diagnosed Start Here:"
YouTube Link 2013-11-12T22:17Z [----] followers, [----] engagements

"ARTHEx biotech - Meet the DM Drug Developers Each month biotechnology pharmaceutical and academic partners large and small working on treatments and a cure for myotonic dystrophy will sit down with our community to share their progress and answer your questions. Learn more about ARTHEx biotech at https://arthexbiotech.com/ Find all our upcoming Meet the DM Drug Developers dates at https://www.myotonic.org/meet-dm-drug-developers About the Presenters Dr. Beatriz Llamusi Msc and PhD in Biochemistry CEO of Arthex Biotech S.L Dr.Llamusi focused her scientific career on studying the molecular"
YouTube Link 2021-06-19T16:46Z [----] followers, [---] engagements

"Understanding Myotonic Dystrophy The Basics The Myotonic Dystrophy Foundation is excited to introduce Understanding Myotonic Dystrophy a new series of short educational animations designed to educate people living with myotonic dystrophy (DM) and their healthcare providers Our first animation Understanding Myotonic Dystrophy The Basics is a broad introduction to myotonic dystrophy to help increase awareness and understanding. We are sincerely thankful to all physicians care providers and patients for their help providing suggestions opinions and input regarding content and design throughout"
YouTube Link 2024-11-20T21:46Z [----] followers, [----] engagements

"Research Updates on DM2 & RAN Proteins as a Therapeutic Target - [----] MDF Annual Conference Dr. Banez Coronel describes how RAN proteins accumulate in DM1 brains and discusses prospective implications for DM treatments. Dr. Disney will present on DM2 Research from his lab at Scripps. Originaly presented on September [--] [----]. Speakers include: -Monica Banez Coronel PhD -Matthew Disney PhD Learn more about the [----] Virtual MDF Annual Conference at https://www.myotonic.org/2021-virtual-mdf-annual-conference Learn more about #myotonicDystrophy at https://www.myotonic.org/myotonic-dystrophy-glance"
YouTube Link 2021-09-29T02:48Z [----] followers, [---] engagements

"Clinical Updates: Cardiac Management Clinical Research Network & Brain Manifestations of DM1 - [----] Innovations that lead to treatments and cures are essential but so are innovations in clinical care. Dr. Mammen provides an overview of the latest and most crucial elements of cardiac care for the DM patient including screening monitoring treatments and procedures. Dr. Johnson focuses on the activities of the Myotonic Dystrophy Clinical Research Network (DMCRN) including the adult natural history study and upcoming pediatric study. He will provide early demographic and clinical characteristics"
YouTube Link 2021-09-29T02:48Z [----] followers, [--] engagements

"PepGen - Meet the DM Drug Developers [----] Originally presented on November 7th [----]. PepGen presents an update on their DM program. Learn more the FREEDOM2-DM1 study at: https://www.freedom2-dm1.com/ Learn more about PepGen at: https://www.pepgen.com/ ========================== Presenters include: James McArthur PhDPresident and Chief Executive Officer at PepGen Jane Larkindale D.PhilVice President of Clinical Science at PepGen Sophia RoePatient Advocacy Associate at PepGen Johanna Hamel MDAssociate Professor of Neurology Pathology & Laboratory Medicine at the University of Rochester"
YouTube Link 2025-11-13T23:04Z [----] followers, [---] engagements

"CNS Symptoms and Meaningful Clinical Trial Endpoints - [----] MDF Conference A summary from the clinical endpoint workshop focusing on CNS clinical presentations and meaningful endpoints in clinical trials for myotonic dystrophy Presenter: + Eric Wang PhD Associate Professor Molecular Genetics & Microbiology University of Florida MDF Medical and Scientific Advisory Committee MDF National Advocacy Committee Explore our other sessions and read about the incredible [----] MDF Conference in Indianapolis Indiana: https://www.myotonic.org/over-700-people-attend-2025-mdf-conference Learn more about"
YouTube Link 2025-08-28T21:22Z [----] followers, [--] engagements

"DM2 Essentials: Understanding Managing & Thriving with DM2 - [----] MDF Conference This session provides an essential understanding of Myotonic Dystrophy Type [--] (DM2) making it ideal for newly diagnosed individuals and those seeking to refresh their knowledge. Learn about the causes and genetics behind DM2 how the condition affects different systems of the body over time and strategies for self-managing symptoms and building a strong clinical care team. Presenter: + Johanna Hamel MD University of Rochester Medical Center Explore our other sessions and read about the incredible [----] MDF"
YouTube Link 2025-08-28T23:03Z [----] followers, [---] engagements

"DM1 Adversely Affects Liver Function & Lipid Metabolism - [----] MDF Conference This session discusses myotonic dystrophy type [--] (DM1) and liver function beyond the importance for the pharmacology of new drugs. Presenter: + Auinash Kalsotra PhD Assistant Professor of Biochemistry University of Illinois Urbana-Champaign Explore our other sessions and read about the incredible [----] MDF Conference in Indianapolis Indiana: https://www.myotonic.org/over-700-people-attend-2025-mdf-conference Learn more about myotonic dystrophy and the Myotonic Dystrophy Foundation (MDF) at https://www.myotonic.org/"
YouTube Link 2025-08-28T21:41Z [----] followers, [--] engagements

"Future Directions of DM Research (Part 2) - [----] MDF Annual Conference Presented byLaura Ranum PhDandEric Wang PhD Opening 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 To learn more about the [----] MDF Annual Conference visit https://www.myotonic.org/2022-mdf-annual-conference For more information on myotonic dystrophy visit https://www.myotonic.org/"
YouTube Link 2022-11-04T04:16Z [----] followers, [---] engagements

"Tech Integration Omics & Beyond in Biomarker Research - [----] MDF Conference Connecting it all: repeat size repeat composition modifier loci and biomarkers of myotonic dystrophy. Presenter: + Andreas Roos PhD Adjunct Professor University of Ottawa Explore our other sessions and read about the incredible [----] MDF Conference in Indianapolis Indiana: https://www.myotonic.org/over-700-people-attend-2025-mdf-conference Learn more about myotonic dystrophy and the Myotonic Dystrophy Foundation (MDF) at https://www.myotonic.org/ Chapters 0:00:00 - Understanding Biomarkers 0:02:46 - Challenges with"
YouTube Link 2025-08-28T20:31Z [----] followers, [--] engagements

"Everything You Wanted to Know About CTG Repeats Dr. Darren Monckton explains the current research concerning the significance of CTG repeats for persons with myotonic dystrophy type [--]. What does the DNA blood test reveal in addition to the number of CTG repeats Can the CTG repeat number vary in one's body and does it change over time Dr. Monckton will address these questions as well as provide an understanding of how to read the blood lab report. Want more information on DM: http://www.myotonic.org Newly Diagnosed Start Here: http://www.myotonic.org/what-dm/start-here Find a Support Group in"
YouTube Link 2014-07-26T00:38Z [----] followers, [----] engagements

"Industry Updates Part [--] - [----] MDF Annual Conference Representatives from biotech and pharma companies will provide updates on their drug development efforts in the DM field. Presenters include: 0:00:00 - Introduction 0:01:47 - PepGen 0:12:46 - Juvena Therapeutics 0:25:37 - Entrada Therapeutics 0:38:55 - NeuBase Therapeutics 0:50:20 - ARTHEx Biotech To learn more about the [----] MDF Annual Conference visit https://www.myotonic.org/2022-mdf-annual-conference For more information on myotonic dystrophy visit https://www.myotonic.org/ myotonic dystrophy industry updates drug development myotonic"
YouTube Link 2022-09-15T03:18Z [----] followers, [---] engagements

"Patient Perspectives: Enhancing Studies & Clinical Trials - MDF [----] Conference Individuals with myotonic dystrophy (DM) know the most: Listening to what is most relevant to the DM community and integration of this knowledge into research and clinical trial design. Moderator: + Moderator Nicholas E. Johnson MD MSci FAAN Virginia Commonwealth University MDF Medical and Scientific Advisory Committee Speakers: + Jeannine DeSoi BSN RN MDF Volunteer Support Group Facilitator DM1 Community Member + Belen Esparis MD MDF Board of Directors MDF National Advocacy Committee Unaffected Caregiver Explore"
YouTube Link 2025-08-28T21:05Z [----] followers, [--] engagements

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