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DM and the Brain (2016 MDF Annual Conference)

 

Drs. John Day, M.D., Ph.D, of Stanford University, Chad Heatwole, M.D., of the University of Rochester and Giovanni Meola, M.D., of the University of Milan present an overview of DM-related disease impacts and symptoms, and the current status of brain-related DM research – at the 2016 MDF Annual Conference.

4/16/18 video
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
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.

4/16/18 video
Pain and DM2

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

4/19/18 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

4/16/18 video
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.

4/16/18 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.

4/19/18 video

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