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Digital Academy

Preview Title Date Type
Congenital DM - The Medical Team

An MDF community member and mother describes the medical team she has assembled for her daughter, Kate.

4/18/18 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)

4/16/18 video
Challenges of DM

People living with myotonic dystrophy have a frank discussion about the biggest challenges facing their lives.

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
Patient-Focused Drug Development Meeting, Part 1 (2016 MDF Annual Conference)


MDF community members living with DM, and their caregivers present on the impacts of DM on daily living, in response to specific questions posed by the Food and Drug Administration, which is in charge of reviewing and approving therapies in the U.S. Dr. Janet Woodcock, M.D., who leads all drug evaluation and research at the FDA, also provided remarks – at the 2016 DM Patient-Focused Drug Development meeting, a component of the 2016 MDF Annual Conference.

7/11/18 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
Pain and DM2

A father and son living with myotonic dystrophy type 2 describe the unique pain they experience with this disease.

6/29/18 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
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
Traveling with DM (2014 MDF Annual Conference)

Community-led session led by Elizabeth Florence and Loraine Dressler. This presentation discusses best practices for traveling with those living with DM.

View related resources from this session

View additional documents from this session: Car Trip Checklist and Rights of Air Travelers with Disabilities

11/2/18 video



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