Digital Academy
| Preview | Title | Date | Type | |
|---|---|---|---|---|
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Challenges of DM |
People living with myotonic dystrophy have a frank discussion about the biggest challenges facing their lives. |
4/16/18 | video |
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Jeremy and Erica Kelly Tribute Video |
A special tribute to Jeremy and Erica Kelly of the Myotonic Dystrophy Foundation. |
4/26/18 | video |
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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 |
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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 |
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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 |
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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: |
7/11/18 | video |
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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. |
7/10/18 | video |
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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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Patient-Focused Drug Development Meeting, Part 2 (2016 MDF Annual Conference) |
MDF community members living with DM and their caregivers present on current symptom management strategies for living with DM, and what they would like to see in clinically-meaningful therapies. Dr. Jonathan Goldsmith, M.D., FACP, head of the Office of Rare Diseases at the FDA, provided a summary of the proceedings and what the FDA took away from the patient input shared at this meeting – at the 2016 DM Patient-Focused Drug Development meeting, a component of the 2016 MDF Annual Conference. |
10/26/18 | video |
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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 |
