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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
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.

10/4/18 video
Advocacy 101: What's Going on In Washington & How You Can Be an Effective Advocate

Adovocacy 101: What's Going on In Washington & How You Can Be an Effective Advocate by Jenn Dale of Faegre Baker Daniels Consulting.

For the first time ever, in 2017, myotonic dystrophy was recognized by leaders in Congress as an eligible research area in the Peer Reviewed Medical Research Program. We’d like to keep the momentum going by providing a legislative update to you, our network of advocates, and encouraging you to keep up that good work by continuing to engage with your Representatives and Senators. We’ll also be sharing some tips and tools that can be useful in your outreach. Topics that we will cover include: 
• What’s going on in Washington 
• MDF’s 2018 legislative agenda 
• Why the constituent voice matters most 
• How to be an effective advocate in your home state/district 
• How to build and strengthen relationships with your Representatives and Senators

7/11/18 video
Advocate for your Health

Jacinda Sampson, M.D., Ph.D., University of Utah School of Medicine

4/16/18 video
AMO Pharma Ltd. - Industry Updates On Drug Development (2018 MDF Annual Conference)

Representatives from biotech and pharma companies will provide updates on their drug development efforts in the DM field. 

Speaker:
Joseph P. Horrigan, MD, AMO Pharma Ltd.

PowerPoint Presentation

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

10/4/18 webinar
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.

11/2/18 video
Beyond ADL (2014 MDF Annual Conference)

Cynthia Gagnon, PhD, OT, of the Université de Sherbrooke, discusses ways to modify daily living activities to best benefit those living with DM.

Click here to view slides from this presentation.

11/2/18 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
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
Bringing the Patient Voice to CNS Targeting Drug Development in DM

MDF community members reported on the impact of myotonic dystrophy on the brain from their individual perspectives as people living with DM1, DM2 and as caregivers. Additional insights and comments were provided by members of the conference audience. The session input will be published and used to help drug developers understand the impact of DM on the brain from the patient perspective, and begin to identify clinical trial endpoints. From the 2017 MDF Annual Conference.

4/16/18 video

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