Beginning the Journey - diagnosed 0-3 years Archives

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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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

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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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Jennifer Wallace Valdes, PT

CureDuchenne Certified Physical Therapist

CureDuchenne Physical Therapy Program

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Paige Lembeck, PhD

Pediatric Psychologist

Yale Child Study Center

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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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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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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

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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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2021 FUTURES Quality of Life Panel: Easing the Burden

Focused on engaging families in conversations about the load they carry and how to manage life as a caregiver.

Taylor Berhow, MSW, MPA

Social Worker and Neuro-behavioral Health Specialist

University of Utah Health

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Tiffany Cook, MS, CCC-SLP

Senior Director

CureDuchenne Cares

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Richard Kravitz, MD

Professor of Pediatric Pulmonary and Sleep Medicine

Duke University

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