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Digital Academy

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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.

10/26/18 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
Vision & Eye Health (2014 MDF Annual Conference)

Todd Goodglick, MD, of Washington Eye Physicians, discusses common ophthalmological issues resulting from myotonic dystrophy and what can be done to address these symptoms.

4/16/18 video
Clinical Trials Training

The Myotonic Dystrophy Foundation presents a training video for clinical trials participants, presented by Dr. Bruce Wentworth of Genzyme, and Jeanne Dekdebrun and Elizabeth Luebbe of the University of Rochester.

4/16/18 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
Facilitating Social Interaction in Myotonic Dystrophy with Dr. Missy Dixon

Watch this presentation on "Facilitating Social Interaction In Myotonic Dystrophy" by Melissa M. Dixon, PhD, MS from the University of Utah.

Download the slide deck!

In this webinar, Dr. Missy Dixon, PhD, MS, reviews the importance of social connection, including the physical health and mental health benefits of social connection, how the illness experience affects social connection and interaction, and how to navigate social connection for those affected with myotonic dystrophy and their caregivers. The webinar discusses the impact of myotonic dystrophy on social status and identity, and provides helpful strategies for facilitating successful social interactions and communication. Planning and problem solving in social situations are reviewed, including goal setting, barriers to social interaction, and how careful planning is crucial to successful social interactions. This is a great resource for those affected with myotonic dystrophy and their caregivers as it provides clear direction and advice on how to manage common social situations that arise in daily life.

5/16/19 video
"Hands" featuring Eric Hutchinson

Directed by Doug Thomsen and Adam Behrmann.

Award-winning recording artist & MDF community member Eric Hutchinson released the song "Hands" on his new album "Modern Happiness" in partnership with MDF! Eric developed the song & video to share his family story & help raise awareness about DM & critically-needed funds for MDF.

"hands" is the most personal song from my new album, Modern Happiness, which I wrote as a tribute to my dad who is living with myotonic muscular dystrophy, or DM. DM is a disease that has affected my dad and my family for over 35 years, but was never something we really talked about. “hands” is a song about being seen and heard as a disabled person.

I teamed up with the Myotonic Dystrophy Foundation to create this video as part of a campaign to raise awareness of the disease and how we can get together to fight it.

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
Accelerating The Search For Therapies: What's Happening, What's Next (2018 MDF Annual Conference)

Dr. Elizabeth Ackermann reports on the results of the 3-year MDF and Wyck Foundation-funded drug development acceleration effort, MDF 3.0, and introduces MDF’s new initiative, MDF 4.0, including the $1M gene editing project, the Myotonic Dystrophy Clinical Research Network study and other aggressive therapy development programs.

PowerPoint Presentation

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

5/15/19 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

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