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Tools and Resources

MDF Website - A Support Tool

Community members describe support and resources they find through www.myotonic.org, and the online MDF Community Forum.

The DM Check Up - Best Practices

Dr. Jacinda Sampson describes strategies for ensuring a successful visit to your medical professional.

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.

The Patient Registry-A Critical Research Tool

Dr. John Day describes the importance of the patient registry in moving research forward.

Applying for Disability Benefits

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

Meditation for Caregivers

In celebration of National Family Caregivers Month (November 2015), the Myotonic Dystrophy Foundation hosted a session on the benefits of having a meditation practice. The webinar was hosted by Dr. Genie Palmer, a former associate professor and researcher at Sofia University.

2015 MDF Annual Conference Community Led Track: Planning Your Child's IEP

Community members Penni Warford, Sarah Clarke and Ann Spaulding discuss best practices for planning and implementing your child's Individualized Education Plan.

2015 MDF Annual Conference: Understanding Reimbursement - Insurance & Patient Advocacy

Mike Adleberg, Dr. Bruce Quinn, MD, PhD, and Dave Zook of Faegre-BD Consulting discuss reimbursement and insurance issues that many people living with DM regularly face.

2015 MDF Annual Conference: ADL & Technology - Using Apps for Independence

Betsy Furler of BridgingApps discusses apps that can be used to improve daily living for those with DM.

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.


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