Clinical Care

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

Lauren Morgenroth, MS, CGC

Chief Operating Officer

TRiNDS

Ashley Yee, MSW

Director of Patient Engagement

Global Genes

Laurie Miller, CSW

Clinical Social Worker

Children's Hospital of Los Angeles

Leona Filis

Special Needs Attorney

The Filis Law Firm, P.C.

Kelly Maynard

Co-Founder

The Duchenne Family Assistance Program

Marissa Penrod

Co-Founder

The Duchenne Family Assistance Program

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

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

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

Missy Dixon, MS, PhD

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

University of Utah

Danielle Forrest, OTR, OTD

Occupational Therapist III

Children’s Health and Rehabilitation Services

Matthew Harmelink, MD

Pediatric Neurologist

Medical College of Wisconsin

Mathula Thangarajh, MD, PhD, FAAN

Assistant Professor of Neurology

Virginia Commonwealth University

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

Doug Levine, PT

CureDuchenne Certified Physical Therapist

CureDuchenne

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

Tom McNalley, MD

Associate Professor of Pediatrics

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

Brenda Wong, MD

Professor of Pediatrics and Neurology and Director

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

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

Tiffany Cook, MS, CCC-SLP

Senior Director

CureDuchenne Cares

Michael Kelly, PhD

Chief Scientific Advisor

CureDuchenne

Sheryl Marrazzo

Duchenne Mother, Grandmother and Advocate

4 Jake's Sake | CureDuchenne

Christina Trout, RN, MSN

Advanced Practice Nurse, Neuromuscular Program

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

Jennifer Wallace Valdes, PT

CureDuchenne Certified Physical Therapist

CureDuchenne Physical Therapy Program

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

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.

This webinar includes a survey for individuals with Duchenne to participate in: https://redcap.kumc.edu/surveys/?s=YCYNMRDLJ9

Jeffrey M. Statland, MD

Professor of Neurology

University of Kansas Medical Center

Kelli Reiling Ott

Clinical Assistant Professor

University of Kansas Medical Center

Vincent Czerwinski, MD

Medical Student

University of Kansas Medical Center

Tiffany Cook, MS, CCC-SLP

Senior Director

CureDuchenne Cares

Doug Levine, PT

CureDuchenne Certified Physical Therapist

CureDuchenne