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Digital Academy

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Congenital & Childhood Onset

Jacinda Sampson, M.D., Ph.D., University of Utah School of Medicine

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.

4/18/18 video
Everything You Wanted to Know About CTG Repeats

Dr. Darren Monckton explains the current research concerning the significance of CTG repeats for persons with DM1.

4/16/18 video
Strategies for Motivating your Juvenile-Onset Adults (2015 MDF Annual Conference)

Community members discuss daily living strategies for motivating their adult children living with juvenile-onset DM1.

Please note: This is an audio recording only. To view the accompanying presentation, please click here.

4/16/18 video
Clinical Research

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

4/16/18 video
DM and Dental Care: the Neglected Health Risk

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.

4/16/18 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
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.

4/16/18 webinar
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

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