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Lifestyle Considerations

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.

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.

Transitioning to Adulthood (2016 MDF Annual Conference)

Watch Transitioning to Adulthood, a video from the 2016 MDF Annual Conference.

Applying for Disability Benefits

Watch Applying for Disability Benefits, a video from the 2016 MDF Annual Conference.

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

Beyond ADL (2014 MDF Annual Conference)

Cynthia Gagnon, PhD, OT, of the Université de Sherbrooke, discusses ways to modify daily living activities to best benefit those living with DM.

Click here to view slides from this presentation.

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.

Planning for Your Future: 1

Travis Finchum, ESQ, Beth W. Patterson, CPA and Lansing Roy, J.D.

Planning for Your Future: 2

Travis Finchum, ESQ, Beth W. Patterson, CPA and Lansing Roy, J.D.

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