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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
Advocate for your Health

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

4/16/18 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
Improving Respiratory Health

Nicholas Johnson, M.D., University of Rochester Medical Center

4/16/18 video
DM & Anticipation, Part 1

Dr. Darren Monckton describes anticipation in myotonic dystrophy, the process by which the disease increases in severity as it is passed from generation to generation.

Watch Part 2 of this series

6/29/18 video
Living Long, Living Well: A Current Approach to Palliative Care

 

On Monday, November 7, 2016, the Myotonic Dystrophy Foundation (MDF) hosted the webinar "Living Long, Living Well: A Current Approach to Palliative Care." During the webinar, Dr. Anne Broderick and Dr. Laurie Gutmann discussed case studies involving palliative care. Additionally, they discussed when to begin that type of care, as well as common misconceptions about palliative care.

11/2/18 video
Creating a Medical Team for DM Care

Dr. Jacinda Sampson describes the importance of, and strategies for, creating a medical team for myotonic dystrophy care.

4/16/18 video
Focus on Congenital DM - What to Expect and Tips for Managing (2015 MDF Annual Conference)

Dr. Craig Campbell, MD, of Western University in Ontario, Canada, has a discussion with audience members about congenital DM. In the video, Dr. Campbell does not follow a set slide show, but he created slides for additional viewing information. Please click here to see his slides.

4/16/18 video
Genetics and Biology

Katharine Hagerman, Ph.D., University of Rochester Medical Center

11/2/18 video
MDF Research Update: What's Been Accomplished, What's Next

Dr. John Porter, PhD, Chief Science Officer at the Myotonic Dystrophy Foundation, reports out on the impact achieved and work carried out to date for the three year, $5M MDF 3.0 initaitive to accelerate drug development for DM, and what MDF is planning for our next drug development acceleration initiative, MDF 4.0. From the 2017 MDF Annual Conference.

4/16/18 video

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