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Newborn Screening and Genetic Testing for Duchenne Muscular Dystrophy: Introduction for Families
This resource offers important information regarding genetic testing for newly diagnosed families.
Next Generation Technology Panel
A brief overview of the rationale behind next generation technology, as well as presentations from the companies in this space. Moderated discussion included.
Video
Video
Palliative Care and Duchenne Muscular Dystrophy
This resource provides an introduction to palliative care’s function, benefits, and how it fits into the multidisciplinary care model for Duchenne.
Tom McNalley, MD
Associate Professor of Pediatrics
University of California San Francisco Benioff's Children's Hospitals
Video
Pathway to Success
This resource discusses managing Duchenne in a school setting: IEP vs. 504 Plans, modifications and accomodations in a school setting, and communicating with educators about Duchenne.
Video
Physical Therapy: Early Intervention
This resource discusses the benefits of early intervention therapy, what to expect from a PT/OT, basic activity modifications, stretching and orthoses for children.
Video
Pillars of the Early Journey
This session is intended for families/caregivers of children and adolescents with Duchenne. It covers four pillars of the early Duchenne journey: Multidisciplinary Care, Steroids, Nutrition, and Involvement in Clinical Trials, and is followed by a discussion/Q&A session.
Barry Byrne, MD, PhD
Professor and Associate Chair
University of Florida, Department of Pediatrics
Diana Castro, MD
Associate Professor of Pediatrics, Neurology and Neurotherapeutics
University of Texas Southwestern
Kindann Fawcett, PhD
Post Doctoral Fellow
University of Arkansas for Medical Sciences
Video
Pillars of the Transition Journey
This session is intended for families/caregivers of teens and adults with Duchenne. It covers four pillars of the transitional Duchenne journey: Continuity of Care, GI-related Care, Medical Privacy, and School/Career/Hobbies, and is followed by a discussion/Q&A session.
Pradeep P.A. Mammen, MD, FACC, FAHA
Associate Professor of Medicine and Co-Director
Senator Paul D. Wellstone Muscular Dystrophy Cooperative Research Center, Director for Translational Research for the Advanced Heart Failure and Transplant Cardiology Program, UT Southwestern Medical Center
Jennifer Shumsky, BSN, RN, CHCO, PACS
Director, Payer Relations
Little Hercules Foundation
Kent Williams, MD
Pediatric Gastroenterologist
Nationwide Children's Hospital
Video
Video
