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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.
Video
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
Video
2019 FUTURES: FUNCTION Panel
This panel discusses clinical care across multiple disciplines for individuals with Duchenne.
Brenda Wong, MD
Professor of Pediatrics and Neurology and Director
UMass Duchenne Muscular Dystrophy Program at the University of Massachusetts Medical School
Andrew Darmahkasih, MD
PGY-2, UC Irvine
Children’s Hospital of Orange County Pediatric Residency Program
John Brandsema, MD
Child Neurologist and Neuromuscular Section Head
Children’s Hospital of Philadelphia
Umme Vahanvaty, MS, RD, CS
Registered Dietitian Nutritionist
Children’s Hospital of Los Angeles
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
Kathryn Wagner, MD, PhD
Director and Professor of Neurology and Neuroscience
Center for Genetic Muscle Disorders at Kennedy Krieger Institute and Johns Hopinks School of Medicine
Video
2019 FUTURES: FUN Panel
This panel discusses adaptive sports, activities, and equipment for individuals with Duchenne.
Austin Edenfield, ATP
Quantum Product & Technical Education Manager
Pride Mobility
Jeffrey Rosenbluth, MD
Medical Director, Spinal Cord Injury Acute Rehabilitation Program
University of Utah Health Sciences Center
Video
Mental Health: Living in the ‘Now’
This resource provides an in-depth view of mental health practices like mindfulness and values-based gratitude practices for adults with Duchenne navigating life’s unique obstacles.
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Managing Stress and Anxiety
This resource presents anxiety and depression in individuals with Duchenne and introduces cognitive-behavioral strategies to mitigate these issues.
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Transition to Adult Care (& Living)
This resource provides an in-depth view of the current “Transition Toolkit” for individuals with Duchenne, as well as resources to support a happy and healthy adult life.
Christina Trout, RN, MSN
Advanced Practice Nurse, Neuromuscular Program
Department of Pediatrics, University of Iowa Stead Family Children’s Hospital
Video
Financial Resources Presentation
This resource provides financial assistance resources like government programs, waivers, savings accounts, and nonprofit support for families navigating Duchenne.
Amy Aikins, CRS A/D
Director, Government and Social Programs
Little Hercules Foundation | Duchenne Family Assistance Program
Video
