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Digital Academy

Preview Title Date Type
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
Sleep Issues Associated with DM

Dr. Chad Ruoff of the Stanford Center for Sleep Science and Medicine discusses common sleep issues associated with myotonic dystrophy, and ways to manage these symptoms.

11/2/18 video
Meditation for Caregivers

In celebration of National Family Caregivers Month (November 2015), the Myotonic Dystrophy Foundation hosted a session on the benefits of having a meditation practice. The webinar was hosted by Dr. Genie Palmer, a former associate professor and researcher at Sofia University.

4/16/18 video
Bringing the Patient Voice to CNS Targeting Drug Development in DM

MDF community members reported on the impact of myotonic dystrophy on the brain from their individual perspectives as people living with DM1, DM2 and as caregivers. Additional insights and comments were provided by members of the conference audience. The session input will be published and used to help drug developers understand the impact of DM on the brain from the patient perspective, and begin to identify clinical trial endpoints. From the 2017 MDF Annual Conference.

4/16/18 video
Living with DM: The Community Speaks

MDF community members speak about the impact that living with DM has on their lives.

9/18/18 video
Applying for Disability Benefits

Speakers include: Melissa Spencer, Deputy Associate Commissioner in the Office of Disability Policy at Social Security Administration; Stacey Cloyd, National Organization of Social Security Claimants’ Representatives (NOSSCR); and Kevin Brennan, Senior Director at Faegre BD Consulting present a panel discussion on successfully applying for Social Security Administration benefits.

11/2/18 video
Studies & Trials - Managing Expectations

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

4/16/18 video
Bringing the Patient Voice to CNS Targeting Drug Development 2: Industry Observations and Feedback

Video #2 from the session: Bringing the Patient Voice to CNS Targeting Drug Development in DM. Dr. Gersham Dent, a neuroscientist working on the DM1 drug development program at Biogen, provides observations on panelists' CNS symptom experiences with regard to possible endpoint identification for future clinical trials of CNS-targeting therapies. From the 2017 MDF Annual Conference.

4/16/18 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
Gastrointestinal Health (2014 MDF Annual Conference)

Linda Nguyen, MD, of Stanford University, discusses GI health as it relates to myotonic dystrophy, and ways to combat these symptoms.

Click here to view the slides from this presentation.

4/16/18 video

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