Myotonic has recently published Consensus-based Care Recommendations for Adults with DM1 in Neurology Clinical Practice online September 13.

Now we need to make sure that every clinician treating a DM patient has them and is using them – and we need your help! Myotonic is asking our community members to help educate their doctors about the care recommendations, and we'll show you how. Watch DM doctors and community members act out entertaining skits that will explain what to say to your doctors during your doctors visits. These skits will include a twist: affected community members will be the doctors and doctors are patients in these hilarious educational vignettes.

Facilitator: Jacinda Sampson, MD, PhD, Stanford University

Find a write up on the DM1 Care Recommendations here.

Click here to download the Clinic Visit Planner.

Background PowerPoint Presentation

Click here for more presentations and videos from the 2018 Myotonic Annual Conference in Nashville, TN.

Current strategies for managing disease progression and maintaining quality of life, including the latest in tools and resources.

Speaker:
Cynthia Gagnon, OT, PhD, Université de Sherbrooke

PowerPoint Presentation

Click here for more presentations and videos from the 2018 Myotonic Annual Conference in Nashville, TN.

Current strategies for managing disease progression and maintaining quality of life, including the latest in tools and resources.

Speaker:
Missy Dixon, PhD, University of Utah

PowerPoint Presentation

Click here for more presentations and videos from the 2018 MDF Annual Conference in Nashville, TN.

In 2017, MDF finally achieved one of its goals for the community when congenital myotonic dystrophy was added to the Compassionate Allowance Program for Social Security Disability. Join us for an informational webinar with SSA representative Deborah Dennis, who will explain how this new development affects the DM community and what will change in the application process going forward. Click here to download the Power Point Presentation.

Darcy Trill, RDHAP, mobile dental hygenist who specializes in the treatment of people with disabilities and special needs in their homes, provides a compelling overview of the risks of ignoring dental health for DM patients, and strategies for achieving and maintaining oral health. From the 2017 MDF Annual Conference.

Dr. Melissa Dixon of the University of Utah discusses mental health challenges and symptoms sometimes experienced by people living with DM, and strategies for coping with everything from depression to anxiety and 'brain fog' From the 2017 MDF Annual Conference.

Dr. Jacinda Sampson, joined by Dr. Ian Bowler, presents on the complications experienced by people living with myotonic dystrophy when they are subjected to anesthesia and, as importantly, other pain medications that can create similar complications and risks. This is critically important information for every DM family member and attending clinician to know. From the 2017 MDF Annual Conference.

On Monday, November 7, 2016, Myotonic hosted the webinar "Living Long, Living Well: A Current Approach to Palliative Care." During the webinar, Dr. Anne Broderick and Dr. Laurie Gutmann discussed case studies involving palliative care. Additionally, they discussed when to begin that type of care, as well as common misconceptions about palliative care.

Dr. Cynthia Gagnon, Ph.D., a professor and member of the interdisciplinary research group on neuromuscular disorders at the University of Sherbrooke in Quebec, CA.

Dr. Karen Blakemore, M.D., director of prenatal genetics at the Prenatal Diagnostic Center in the Johns Hopkins Department of Gynecology and Obstetrics, Julie Cohen, certified genetic counselor in the Center for Genetic Muscle Disorders at the Kennedy Krieger Institute, and Alice Schindler, MS, genetic counselor at the National Institutes of Neurological Disorders and Stroke (NINDS), provide a comprehensive overview of family planning strategies and considerations for families living with myotonic dystrophy – at the 2016 MDF Annual Conference.