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Digital Academy: Disease Management

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Consensus-based Care Recommendations: What Do They Mean for You? (2018 MDF Annual Conference)

MDF has recently published Consensus-based Care Recommendations for Adults with DM1 in Neurology Clinical Practice online September 13.

Now we need to make sure that every clinician treating a DM patient has them and is using them – and we need your help! MDF is asking our community members to help educate their doctors about the care recommendations, and we'll show you how. Watch DM doctors and community members act out entertaining skits that will explain what to say to your doctors during your doctors visits. These skits will include a twist: affected community members will be the doctors and doctors are patients in these hilarious educational vignettes.

Facilitator: Jacinda Sampson, MD, PhD, Stanford University

Find a write up on the DM1 Care Recommendations here.

Click here to download the Clinic Visit Planner.

Background PowerPoint Presentation

Click here for more presentations and videos from the 2018 MDF Annual Conference in Nashville, TN.

11/2/18 video
Dr. Dixon - 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.

Speaker:
Missy Dixon, PhD, University of Utah

PowerPoint Presentation

Click here for more presentations and videos from the 2018 MDF Annual Conference in Nashville, TN.

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.

Speaker:
Cynthia Gagnon, OT, PhD, Université de Sherbrooke

PowerPoint Presentation

Click here for more presentations and videos from the 2018 MDF Annual Conference in Nashville, TN.

11/2/18 video
Living with DM: Patients Report on Changes Over Time (2018 MDF Annual Conference)

This interactive panel session was presented in a similar format to the Patient-Focused Drug Development meeting presented by MDF as a part of the 2016 MDF Annual Conference, and the CNS Endpoint Development discussion presented at the 2017 MDF Annual Conference. Panelists discussed the disease symptom changes they have experienced living with myotonic dystrophy, followed by facilitated audience participation. This session is intended to amplify and deepen our understanding of disease changes and progression from the perspective of individuals and families living with DM.

Moderated by Charles Thornton, MD, University of Rochester

PowerPoint Presentation

Click here for more presentations and videos from the 2018 MDF Annual Conference in Nashville, TN.

11/2/18 video
Understanding SSA Compassionate Allowance for CDM

In 2017, MDF finally achieved one of its goals for the community when congenital myotonic dystrophy was added to the Compassionate Allowance Program for Social Security Disability. Join us for an informational webinar with SSA representative Deborah Dennis, who will explain how this new development affects the DM community and what will change in the application process going forward. Click here to download the Power Point Presentation.

11/2/18 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
Beyond General Anesthesia: Opiates and Other Pain Meds

Dr. Jacinda Sampson, joined by Dr. Ian Bowler, presents on the complications experienced by people living with myotonic dystrophy when they are subjected to anesthesia and, as importantly, other pain medications that can create similar complications and risks. This is critically important information for every DM family member and attending clinician to know. From the 2017 MDF Annual Conference.

4/16/18 video
DM and Mental Health: Managing Anxiety, Depression and Other Symptoms

Dr. Melissa Dixon of the University of Utah discusses mental health challenges and symptoms sometimes experienced by people living with DM, and strategies for coping with everything from depression to anxiety and 'brain fog' From the 2017 MDF Annual Conference.

4/16/18 video
Living Long, Living Well: A Current Approach to Palliative Care

 

On Monday, November 7, 2016, the Myotonic Dystrophy Foundation (MDF) hosted the webinar "Living Long, Living Well: A Current Approach to Palliative Care." During the webinar, Dr. Anne Broderick and Dr. Laurie Gutmann discussed case studies involving palliative care. Additionally, they discussed when to begin that type of care, as well as common misconceptions about palliative care.

11/2/18 video
Transitioning to Adulthood (2016 MDF Annual Conference)

Jo Ann Simons, MSW, Chief Executive Officer of Northeast ARC, provides a comprehensive overview on transitioning juvenile-onset teens and young adults with myotonic dystrophy to independent living situations - at the 2016 MDF Annual Conference.

11/2/18 video

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