Congenital and Childhood Onset

Congenital DM - The Medical Team

An MDF community member and mother describes the medical team she has assembled for her daughter, Kate.

Ask-the-Expert: Key Neuropsychological Features of DM1

Do you have questions about brain-fog and the cognitive issues associated with DM1? Join DM expert Benjamin Gallais, PhD, of the The Center for the Study of Living Conditions and the Needs of the Population (ECOBES) for an “Ask-the-Expert” session on Key Neuropsychological Features of DM1.

AMO Pharma - Meet the DM Drug Developers

In August 2020, AMO Pharma published the results of a Phase 2 study utilizing AMO-02 (Tideglusib) for Childhood Onset DM1 in Pediatric Neurology. AMO Pharma is excited to announce they will be moving forward with the REACH-CDM Clinical Trial for AMO-02 after the US FDA and Health Canada approved their recently revised study protocols.

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.

Strategies for Motivating your Juvenile-Onset Adults (2015 Myotonic Annual Conference)

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

Planning Your Child's IEP (2015 Myotonic Annual Conference)

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

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.

Working with Hippotherapy (2014 Myotonic 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.

Tips for Parents Caring for Children with Congenital DM

This webinar is presented by a group of mothers 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).

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