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Digital Academy

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Clinical Research

Nicholas Johnson, M.D., University of Rochester Medical Center

4/16/18 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
Dr. Moxley Retirement 2018

MDF created a short video to recognize and celebrate Moxley’s incredible commitment and impact on the treatment of myotonic dystrophy and scientific discovery to drive disease understanding and therapy development. “Mox” is in many ways irreplaceable, functioning as a singular force in the myotonic dystrophy field for over four decades.

Read more about the tribute to Dr. Moxley.

7/10/18 video
Food Prep for Dysphagia (2014 MDF Annual Conference)

Community-led session presented by Regina Thompson and Jessica Nussbaum. Two caregivers discuss different ways of preparing food for those with dysphagia.

View the MDF Cookbook

View related content from this presentation

4/16/18 video
Studies & Trials - Managing Expectations

Nicholas Johnson, M.D., University of Rochester Medical Center

4/16/18 video
Patient-Focused Drug Development Meeting, Part 1 (2016 MDF Annual Conference)


MDF community members living with DM, and their caregivers present on the impacts of DM on daily living, in response to specific questions posed by the Food and Drug Administration, which is in charge of reviewing and approving therapies in the U.S. Dr. Janet Woodcock, M.D., who leads all drug evaluation and research at the FDA, also provided remarks – at the 2016 DM Patient-Focused Drug Development meeting, a component of the 2016 MDF Annual Conference.

7/11/18 video
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.

4/18/18 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.

Missy Dixon, PhD, University of Utah

PowerPoint Presentation

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

11/2/18 video
FDA 101

Deborah Miller and Salina Prasad of the US Food & Drug Administration provide an overview of the agency and discuss patient advocacy as it relates to the FDA.

4/16/18 video



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