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Manejo del diagnóstico de DMD: Re-imaginemos la aventura
Esta presentación se enfoca en manejar los desafíos asociados con un diagnóstico de Duchenne.
Video
DMD Clinical Trials: An Overview
This resource presents information on the clinical trial process, common clinical trial terms, updated trial processes due to telehealth, and more.
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2019 FUTURES: FITNESS Panel
This panel discusses mental and physical fitness in individuals with Duchenne.
Tom McNalley, MD
Associate Professor of Pediatrics
University of California San Francisco Benioff's Children's Hospitals
Missy Dixon, MS, PhD
Visiting Assistant Professor, Department of Pediatrics, Divisions of Pediatric Neurology, Psychiatry and Behavioral Health
University of Utah
Jennifer Wallace Valdes, PT
CureDuchenne Certified Physical Therapist
CureDuchenne Physical Therapy Program
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A Holistic View of Clinical Trials
This panel discussion provides a robust conversation about how clinical trials intersect with family life in the Duchenne community.
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DMD Genetics and Your Family
This resource presents information on genetic carrier health, carrier testing options and resources, family planning education, and carrier burden information.
Kimberly Nugent, CGC
Certified Genetic Counselor
Children's Hospital of San Antonio, Baylor College of Medicine
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Discussion on the Unique Dynamics in DMD-Affected Home
This resource presents a conversation about family dynamics, communication strategies and how to cope as a family unit navigating a Duchenne diagnosis.
Taylor Berhow, MSW, MPA
Social Worker and Neuro-behavioral Health Specialist
University of Utah Health
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DMD and Post-traumatic Stress
This resource presents information on how to cope with mental heath issues like anxiety and PTSD after a medical emergency.
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Emergency Care
This resource presents information on emergency care guidelines for individuals with Duchenne, and tips on how to communicate with emergency care providers in the event of an urgent hospital visit.
Stefan Malin, MD, MS
Pediatric Critical Care Fellow
Riley Hospital for Children at IU Health
Video
2019 FUTURES: FAMILY Panel
This panel discusses genetic carrier health, mental health and coping skills, and assistance for Duchenne families.
Virginia Kimonis, MD, MRCP
Professor, Department of Pediatrics, Division of Genetics and Genomic Medicine
University of California, Irvine Medical Center, Children’s Hospital of Orange County
Laurie Miller, CSW
Clinical Social Worker
Children's Hospital of Los Angeles
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