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Digital Academy

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Living with DM: The Community Speaks

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

4/19/18 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.

4/16/18 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.

4/16/18 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
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
Pulmonary Considerations Session

 

Dr. Noah Lechtzin, M.D., an associate professor of medicine at the Johns Hopkins University School of Medicine, presents on common respiratory impacts in myotonic dystrophy and strategies for symptom management – at the 2016 MDF Annual Conference.

4/16/18 video
Genetic Counseling

Judith Ranells, M.D., University of South Florida

4/16/18 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

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