Digital Academy
| Preview | Title | Date | Type | |
|---|---|---|---|---|
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Disclosing & Talking About Your Disorder |
Many people who are affected by myotonic dystrophy (DM) find it difficult to disclose their condition to those closest to them. This MDF webinar will include a thoughtful discussion of the sensitivities surrounding disclosure, and strategies for thinking about and communicating DM status to friends, family, and intimate partners. This webinar is presented by Dr. Barry Cohen, PhD, licensed consulting psychologist and DM family member. |
11/2/18 | video |
 |
Gastrointestinal Health (2014 MDF Annual Conference) |
Linda Nguyen, MD, of Stanford University, discusses GI health as it relates to myotonic dystrophy, and ways to combat these symptoms. Click here to view the slides from this presentation. |
4/16/18 | video |
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FDA 101 |
Deborah Miller and Salina Prasad of the US Food & Drug Administration provide an overview of the agency and discuss patient advocacy as it relates to the FDA. |
4/16/18 | video |
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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 |
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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 |
 |
DM Advocacy Update and Training - Winter 2018 |
Speaker: Jenn Dale of Faegre Baker Daniels. Learn how you can help advocate with your congressional representatives for important projects like PRMRP. Get updates on our current advocacy efforts and learn how you have a critical role to play in convincing congressional leaders to support our requests. |
12/4/18 | webinar |
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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.
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11/2/18 | video |
