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Digital Academy

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Everything You Wanted to Know About CTG Repeats

Dr. Darren Monckton explains the current research concerning the significance of CTG repeats for persons with DM1.

4/16/18 video
Consensus-based Care Recommendations: What Do They Mean for You? (2018 MDF Annual Conference)

MDF has recently published Consensus-based Care Recommendations for Adults with DM1 in Neurology Clinical Practice online September 13.

Now we need to make sure that every clinician treating a DM patient has them and is using them – and we need your help! MDF is asking our community members to help educate their doctors about the care recommendations, and we'll show you how. Watch DM doctors and community members act out entertaining skits that will explain what to say to your doctors during your doctors visits. These skits will include a twist: affected community members will be the doctors and doctors are patients in these hilarious educational vignettes.

Facilitator: Jacinda Sampson, MD, PhD, Stanford University

Find a write up on the DM1 Care Recommendations here.

Click here to download the Clinic Visit Planner.

Background PowerPoint Presentation

Click here for more presentations and videos from the 2018 MDF Annual Conference in Nashville, TN.

11/2/18 video
Planning Your Child's IEP (2015 MDF Annual Conference)

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

This is an audio recording only. To see the handout that accompanied this presentation, please click here.

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
Expanding the Pipeline: Industry Updates on Drug Development

Dr. Laury Mignon, from Ionis Pharmaceuticals, and Dr. Joseph Horrigan from AMO Pharma, report on the status of drug development efforts for DM patients. Jeremy Kelly and Dr. John Porter of the Myotonic Dystrophy Foundation introduce the session with a short overview on MDF's efforts to engage industry in DM therapy development. From the 2017 MDF Annual Conference.

4/16/18 video
Sleep Issues Associated with DM

Dr. Chad Ruoff of the Stanford Center for Sleep Science and Medicine discusses common sleep issues associated with myotonic dystrophy, and ways to manage these symptoms.

11/2/18 video
Conference Q&A (2018 MDF Annual Conference)

A panel of clinical and research experts will answer community member questions that have been submitted throughout the conference.

Panelists include:
Cynthia Gagnon, PhD, OT, Université de Sherbrooke
Laurie Gutmann, MD, University of Iowa
Charles Thornton, MD, University of Rochester
Laurence Mignon, PhD, Ionis Pharmaceuticals

Click here for more presentations and videos from the 2018 MDF Annual Conference in Nashville, TN.

10/3/18 video
Strategies for Motivating your Juvenile-Onset Adults (2015 MDF Annual Conference)

Community members discuss daily living strategies for motivating their adult children living with juvenile-onset DM1.

Please note: This is an audio recording only. To view the accompanying presentation, please click here.

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.

6/29/18 video
DM Sleep Disorders: Updated Research and Management Strategies

Dr. John Day of Stanford University presents an overview of brain-related DM impacts that can affect sleep, and current thinking regarding strategies to manage this very prevalent DM symptom. From the 2017 MDF Annual Conference.

4/16/18 video

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