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Digital Academy: Community Voices and Inspiration

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"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.

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
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
Conference Q&A (2018 MDF Annual Conference)

A panel of clinical and research experts will answer community member questions that have been submitted throughout the conference.

Panelists include:
Cynthia Gagnon, PhD, OT, Université de Sherbrooke
Laurie Gutmann, MD, University of Iowa
Charles Thornton, MD, University of Rochester
Laurence Mignon, PhD, Ionis Pharmaceuticals

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

10/3/18 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
Dr. Moxley Retirement 2018

MDF created a short video to recognize and celebrate Moxley’s incredible commitment and impact on the treatment of myotonic dystrophy and scientific discovery to drive disease understanding and therapy development. “Mox” is in many ways irreplaceable, functioning as a singular force in the myotonic dystrophy field for over four decades.

Read more about the tribute to Dr. Moxley.

7/10/18 video
Jeremy and Erica Kelly Tribute Video

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

4/26/18 video
DM Heroes

There are many heroes in the MDF community, from the people living with this disease to their caregivers, physicians and the researchers who focus on developing therapies and better disease understanding every day. Watch this moving short film to hear a few of these heroes described and celebrated.

10/26/18 video

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