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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.

 

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.

 

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.

 

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.

 

Drs. Laurence Mignon, Ph.D., director of clinical development at Ionis Pharmaceuticals, and Michael Horrigan, M.D., chief medical officer at AMO Pharma, present updates on the status of Phase I/II clinical trials current underway at their industry institutions for potential DM1 therapies – at the 2016 MDF Annual Conference.

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