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

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