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Digital Academy

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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. Gagnon - 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 with Cynthia Gagnon, OT, PhD, Université de Sherbrooke

5/15/19 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.

5/16/19 video
DM and the Brain (2016 MDF Annual Conference)

Watch DM and the Brain, a video from the 2016 MDF Annual Conference.

10/26/18 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
Locana - Industry Updates On Drug Development (2018 MDF Annual Conference)

Ranjan Batra, PhD, Locana, provides an update on their drug development efforts in the DM field. 

5/16/19 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
Patient-Focused Drug Development Meeting, Part 1 (2016 MDF Annual Conference)

Watch Patient-Focused Drug Development Meeting, Part 1, a video from the 2016 MDF Annual Conference.

7/11/18 video
On Being a Fearless Caregiver

This webinar addresses issues related to caregiver advocacy – partnering with the healthcare team and other family members – as well as self-care and managing the role of a caregiver. 

5/15/19 video
Expansion Therapeutics - 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. Matthew Disney, PhD, Expansion Therapeutics

5/15/19 video

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