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Digital Academy

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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
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.

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
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

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