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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
The Clinical Trial: Real-Life Experiences (2013 MDF Annual Conference)

Pat Furlong, CEO of Parent Project Muscular Dystrophy, will share the experiences of Duchenne community members who have participated in clinical trials.

(View a PDF of Ms. Furlong's presentation)

5/15/19 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.

5/16/19 video
Hormone Issues Associated with DM1 & DM2

Dr. Richard Moxley of the University of Rochester addresses different endocrine problems that challenge patients with mytonic dystrophy types 1 & 2, how they can lead to symptoms and be associated with alterations in blood test measurements, known treatments to mitigate potential symptoms and future opportunities to develop better understanding of these endocrine problems.

4/16/18 video
Jeremy and Erica Kelly Tribute Video

A special tribute to Jeremy and Erica Kelly of the Myotonic Dystrophy Foundation.

4/26/18 video
Tips for Parents Caring for Children with Congenital DM

This webinar is presented by a group of moms offering their knowledge and experience raising children with congenital DM. This webinar includes informed, practical suggestions from alleviating gastro-intestinal challenges with proper diet and natural supplements to advocating for your child's Individualized Education Program (IEP).

5/30/18 video
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.

5/15/19 video
Staying Strong - DM & Exercise Panel (2015 MDF Annual Conference)

A panel of physical therapy professionals and people living with DM discuss ways to stay physically fit.

Panel discussion by Dr. Katy Eichinger, PT, DPT, University of Rochester; Mike Hamlin, DM Community Member; Dr. Leslie Krongold, EdD, Myotonic Dystrophy Foundation.

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.

5/15/19 video
Living with DM2

Dr. Matt Disney and Dr. John Day provide an overview of the DM2 disease mechanism and describe how compounds can be designed as potential therapies for this disease.

4/16/18 video

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