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Digital Academy: Congenital and Childhood Onset

Preview Title Date Type
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.

11/2/18 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
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
Focus on Congenital DM - What to Expect and Tips for Managing (2015 MDF Annual Conference)

Dr. Craig Campbell, MD, of Western University in Ontario, Canada, has a discussion with audience members about congenital DM. In the video, Dr. Campbell does not follow a set slide show, but he created slides for additional viewing information. Please click here to see his slides.

4/16/18 video
Working with Hippotherapy (2014 MDF Annual Conference)

Community-led session led by Sarah Berman, Erica Kelly, and Catherine Wycoff, DPT, GCFP, ABMCP. Parents of children living with DM and a hippotherapy specialist discuss the benefit that this type of therapy can often have.

View related web resources from this presentation

4/16/18 video
Tips for Parents Caring for Children with Congenital DM

This webinar is presented by a group of moms offering their knowledge and experience raising children with congenital DM. This webinar includes informed, practical suggestions from alleviating gastro-intestinal challenges with proper diet and natural supplements to advocating for your child's Individualized Education Program (IEP).

5/30/18 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
Congenital & Childhood Onset

Jacinda Sampson, M.D., Ph.D., University of Utah School of Medicine

4/16/18 video

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