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Digital Academy

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Family Planning (2016 MDF Annual Conference)

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.

4/16/18 video
Webinar: Decline of Executive Function of the CNS

As the inaugural presentation in our Living with DM Webinar series, we discuss the decline of executive function in the CNS due to myotonic dystrophy, as well as strategies for managing this symptom, and an update on current CNS research.

11/2/18 video
Dr. Dixon - Strategies For Managing Progression (2018 MDF Annual Conference)

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.

 

5/15/19 video
Traveling with DM (2014 MDF Annual Conference)

Community-led session led by Elizabeth Florence and Loraine Dressler. This presentation discusses best practices for traveling with those living with DM.

View related resources from this session

View additional documents from this session: Car Trip Checklist and Rights of Air Travelers with Disabilities

5/17/19 video
Occupational Therapy (2016 MDF Annual Conference)

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.

10/26/18 video
Treatment for Dysphagia

A discussion of the signs and symptoms of dysphagia, a swallowing disorder, as well as the different muscles that can be affected by this DM symptom.

4/18/18 video
Accelerating The Search For Therapies: What's Happening, What's Next (2018 MDF Annual Conference)

Dr. Elizabeth Ackermann reports on the results of the 3-year MDF and Wyck Foundation-funded drug development acceleration effort, MDF 3.0, and introduces MDF’s new initiative, MDF 4.0, including the $1M gene editing project, the Myotonic Dystrophy Clinical Research Network study and other aggressive therapy development programs.

PowerPoint Presentation

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

5/15/19 video
Working with Hippotherapy (2014 MDF Annual Conference)

Community-led session led by Sarah Berman, Erica Kelly, and Catherine Wycoff, DPT, GCFP, ABMCP. Parents of children living with DM and a hippotherapy specialist discuss the benefit that this type of therapy can often have.

View related web resources from this presentation

5/15/19 video
DM and the Brain (2016 MDF Annual Conference)

Drs. John Day, M.D., Ph.D, of Stanford University, Chad Heatwole, M.D., of the University of Rochester and Giovanni Meola, M.D., of the University of Milan present an overview of DM-related disease impacts and symptoms, and the current status of brain-related DM research – at the 2016 MDF Annual Conference.

10/26/18 video
Disclosing & Talking About Your Disorder

Many people who are affected by myotonic dystrophy (DM) find it difficult to disclose their condition to those closest to them. This MDF webinar will include a thoughtful discussion of the sensitivities surrounding disclosure, and strategies for thinking about and communicating DM status to friends, family, and intimate partners. This webinar is presented by Dr. Barry Cohen, PhD, licensed consulting psychologist and DM family member.

11/2/18 video

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