Clinical Care

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The Clinical Care section provides information on topics related to the standards of care for Duchenne, care coordination, transition guidelines and more.

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

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Lauren Morgenroth, MS, CGC

Chief Operating Officer

TRiNDS

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Ashley Yee, MSW

Director of Patient Engagement

Global Genes

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Laurie Miller, CSW

Clinical Social Worker

Children's Hospital of Los Angeles

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Leona Filis

Special Needs Attorney

The Filis Law Firm, P.C.

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Kelly Maynard

Co-Founder

The Duchenne Family Assistance Program

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Marissa Penrod

Co-Founder

The Duchenne Family Assistance Program

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Beginning the Journey - diagnosed 0-3 yearsGrowth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years

2019 FUTURES: FUNCTION Panel

This panel discusses clinical care across multiple disciplines for individuals with Duchenne.

Eric Ball, MD

Pediatrician

Southern Orange County Pediatric Associates

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Brenda Wong, MD

Professor of Pediatrics and Neurology and Director

UMass Duchenne Muscular Dystrophy Program at the University of Massachusetts Medical School

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Andrew Darmahkasih, MD

PGY-2, UC Irvine

Children’s Hospital of Orange County Pediatric Residency Program

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John Brandsema, MD

Child Neurologist and Neuromuscular Section Head

Children’s Hospital of Philadelphia

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Umme Vahanvaty, MS, RD, CS

Registered Dietitian Nutritionist

Children’s Hospital of Los Angeles

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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

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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

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Beginning the Journey - diagnosed 0-3 yearsGrowth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years

2021 FUTURES Quality of Life Panel: Cognition in Duchenne

Focused on cognitive abilities and psychological wellness in individuals living with Duchenne.

Tiffany Cook, MS, CCC-SLP

Senior Director

CureDuchenne Cares

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Missy Dixon, MS, PhD

Visiting Assistant Professor, Department of Pediatrics, Divisions of Pediatric Neurology, Psychiatry and Behavioral Health

University of Utah

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Danielle Forrest, OTR, OTD

Occupational Therapist III

Children’s Health and Rehabilitation Services

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Matthew Harmelink, MD

Pediatric Neurologist

Medical College of Wisconsin

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Mathula Thangarajh, MD, PhD, FAAN

Assistant Professor of Neurology

Virginia Commonwealth University

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Beginning the Journey - diagnosed 0-3 yearsGrowth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years

2021 FUTURES Quality of Life Panel: Defining Happiness

Focused on the intersection between physical needs and living a fulfilling life.

Tiffany Cook, MS, CCC-SLP

Senior Director

CureDuchenne Cares

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Doug Levine, PT

CureDuchenne Certified Physical Therapist

CureDuchenne

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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

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Tom McNalley, MD

Associate Professor of Pediatrics

University of California San Francisco Benioff's Children's Hospitals

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Brenda Wong, MD

Professor of Pediatrics and Neurology and Director

UMass Duchenne Muscular Dystrophy Program at the University of Massachusetts Medical School

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Beginning the Journey - diagnosed 0-3 yearsGrowth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years

2021 FUTURES Quality of Life Panel: Making Decisions

Focused on empowering families to make informed decisions about their child’s care / personal care across all junctures of the Duchenne journey.

John Brandsema, MD

Child Neurologist and Neuromuscular Section Head

Children’s Hospital of Philadelphia

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Tiffany Cook, MS, CCC-SLP

Senior Director

CureDuchenne Cares

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Michael Kelly, PhD

Chief Scientific Advisor

CureDuchenne

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Sheryl Marrazzo

Duchenne Mother, Grandmother and Advocate

4 Jake's Sake | CureDuchenne

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Christina Trout, RN, MSN

Advanced Practice Nurse, Neuromuscular Program

Department of Pediatrics, University of Iowa Stead Family Children’s Hospital

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Jennifer Wallace Valdes, PT

CureDuchenne Certified Physical Therapist

CureDuchenne Physical Therapy Program

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Beginning the Journey - diagnosed 0-3 yearsGrowth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years

A Family Guide to Dealing With Duchenne Muscular Dystrophy

This resource presents the history of Duchenne muscular dystrophy and provides a basic understanding of the genetics, management and treatment of the diesease.

Samiya Ahmad, MD

Assistant Professor of Pediatrics, Child Neurology and Sleep Medicine | Medical Director, Comprehensive Neuromuscular Center

Baylor College of Medicine | Children's Hospital of San Antonio

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Beginning the Journey - diagnosed 0-3 years

CureDuchenne Cares Educational Webinar: Reimagining Quality of Life in Duchenne

This webinar, in partnership with the University of Kansas Medical Center, explores topics like achieving milestones, quality of life, and setting goals in families navigating Duchenne muscular dystrophy. The panelists also discuss how to incorporate quality of life metrics into clinical care.

Jeffrey M. Statland, MD

Professor of Neurology

University of Kansas Medical Center

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Kelli Reiling Ott

Clinical Assistant Professor

University of Kansas Medical Center

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Vincent Czerwinski, MD

Medical Student

University of Kansas Medical Center

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Tiffany Cook, MS, CCC-SLP

Senior Director

CureDuchenne Cares

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Doug Levine, PT

CureDuchenne Certified Physical Therapist

CureDuchenne

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Growth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years