Myotonic invites you to join our Friday Afternoon Webinar Series featuring presentations by DM expert clinicians, researchers, community members, and more! Each Friday afternoon at 12:00 PM PDT a new webinar will feature a different topic designed for our community at large - no advanced knowledge of the topics is needed to participate. Make sure to register for each session below! Questions? Contact us at firstname.lastname@example.org or phone us at 415-872-7924.
Stay Tuned for More Webinar Opportunities!
Sleep & Breathing Support for Myotonic Dystrophy during the COVID-19 Pandemic
Presented on April 17th by Dr. John Day, Dr. Jacinda Sampson & Dr. Michelle Cao. Learn why daytime sleepiness in myotonic dystrophy is often caused by altered breathing during sleep. While breathing support with CPAP or BiPAP devices can improve sleep quality, their effectiveness can be diminished by respiratory infections, especially pneumonia. Sleep and breathing considerations for people with myotonic dystrophy will be discussed in the context of COVID-19. Watch Sleep & Breathing Support for Myotonic Dystrophy during the COVID-19 Pandemic now!
How Common is Myotonic Dystrophy in the United States? Findings from the Recent Prevalence Study
Presented on April 24th by Dr. Nicholas Johnson. This presentation will discuss the outcome of the recent study exploring the prevalence of myotonic dystrophy type 1 in the United States. We will discuss the study, the first of its kind focused on myotonic dystrophy, including how common we now believe the disease to be in the general population, how that number as determined, implications for ongoing testing for DM1 in the general population, and what it may mean for helping advance DM1 treatment and drug development. Watch How Common is Myotonic Dystrophy in the United States? Findings from the Recent Prevalence Study now!
Food Preparation for the DM Community
Presented on May 1st by Dr. Leslie Krongold. 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. Watch Food Preparation for the DM Community.
Caring for the Caregiver
Presented on May 8th by Valeria Ochoa. Identify and learn how to manage your responsibilities as a caregiver. Learn how to recognize, understand, and respond to the emotional challenges of being a caregiver. Explore stress management techniques and learn of the resources available for caregivers and care receivers. Watch Caring for the Caregiver now!
Virtual Chair Yoga
Presented on May 15th by Ellen Shapiro. Join Ellen Shapiro for a gentle chair yoga session. We will do some breath awareness, stretching, and mindful movements. Yoga helps to calm us and build flexibility and strength. If you are experiencing anxiety during these unusual times, this might be a nice relaxing session for you! No yoga experience or equipment necessary! Watch Virtual Chair Yoga now!
Beyond Activities of Daily Living (ADLs): Strategies for Life Modifications, Socializing and More during COVID-19
Presented on May 22nd by Dr. Cynthia Gagnon & Samar Muslemani. This webinar will discuss ways to modify daily living activities to best benefit those living with DM. Dr Gagnon will discuss the purpose of occupational therapy (OT), what OT can do for you, alert signs and practical tips, including considerations for managing home quarantine during COVID-19. She will review daily living challenges related to home confinement and physical distancing, practical solutions and recommendations. Watch Beyond Activities of Daily Living (ADLs): Strategies for Life Modifications, Socializing and More during COVID-19 now!
Gene Editing for DM
Presented on May 29th by Dr. Vincent Dion. Gene editing is the permanent correction of a genetic mutation. The hope is that it becomes a treatment for many currently incurable diseases, including myotonic dystrophy. Dr. Dion will discuss the progress that has been made in the field and the limitations and challenges that remain before a safe and efficient method can make its way to the clinic. Watch Gene Editing for Myotonic Dystrophy now!
Exercise for the DM Community
Presented on June 5th by Dr. Katy Eichinger & Dr. Tina Duong. Understanding the importance of exercise is vital for myotonic dystrophy care. Two physical therapists, Dr. Katy Eichinger and Dr. Tina Duong, will present information on the benefits of exercise can have on DM, recommendations on aerobic activity, types of exercise, monitoring exercise, exercise strategies and finding motivation. Watch Exercise for the Myotonic Dystrophy Community now!
Multi-Systemic and Cognitive Aspects of Myotonic Dystrophy Type 2
Presented on June 12th by Dr. Giovanni Meola. 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. Watch Multi-Systemic and Cognitive Aspects of Myotonic Dystrophy Type 2 now!
Myotonic Dystrophy and the Brain: Causes, Effects and Treatment
Presented on June 19th by Dr. John Day, Dr. Jacinda Sampson, Dr. Gayle Deutsch & Dr. Tahereh Kamali. Myotonic dystrophy can cause mental fatigue, daytime sleepiness, forgetfulness, confusion or “brain fog”, all related to altered brain activity. However, there is some good news – the number of nerve cells in the brains of people with myotonic dystrophy is nearly normal. The nerves do, though, have molecular and functional abnormalities caused by the underlying myotonic dystrophy genetic change. These features suggest that brain function in myotonic dystrophy might be improved with treatment, which some drug trials have already started to address. Many other potential treatments are in the pipeline. We are eager to work with the myotonic dystrophy community to prepare for these upcoming trials by validating methods that accurately measure treatment effects, which will help optimally control myotonic dystrophy effects on the brain. Watch Myotonic Dystrophy and the Brain: Causes, Effects and Treatment now!