Community

The Community section provides information on topics related to finding and building a supportive community, family support resources, inspiring messages from young men with Duchenne 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: FRIENDS Panel

This panel discusses inclusivity and the importance of meaningful relationships for individuals with Duchenne.

Hawken Miller

Journalist

Washington Post

Doug Levine, PT

CureDuchenne Certified Physical Therapist

CureDuchenne

Holly Van Meeteren, OTR/L

Occupational Therapist

Tustin Unified School District

Tiffany Cook, MS, CCC-SLP

Senior Director

CureDuchenne Cares

Benjamin Tilford

Program Lead

Assistance League of Tustin: Assisteens® Buddy

2019 FUTURES: FUN Panel

This panel discusses adaptive sports, activities, and equipment for individuals with Duchenne.

Armando Ornelas

Head Coach

LA Avengers Power Soccer Team

Austin Edenfield, ATP

Quantum Product & Technical Education Manager

Pride Mobility

Melissa McIntyre, PT, DPT

Physical therapist

University of Utah Health

Tanja Kari, MS

Program Director

TRAILS

Jeffrey Rosenbluth, MD

Medical Director, Spinal Cord Injury Acute Rehabilitation Program

University of Utah Health Sciences Center

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: 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

Tiffany Cook, MS, CCC-SLP

Senior Director

CureDuchenne Cares

Richard Kravitz, MD

Professor of Pediatric Pulmonary and Sleep Medicine

Duke University

Marissa Penrod

Co-Founder

The Duchenne Family Assistance Program

Lori Safford

Duchenne Mother and Advocate

2021 FUTURES: Keynote Panel

An inspiring conversation about living in the moment with a rare diagnosis.

Sean Baumstark

Co-Founder

Two Disabled Dudes

Kyle Bryant

Co-Founder

Two Disabled Dudes

Jake Marrazzo

Living with Duchenne

Glenn Olesen

Living with Duchenne

GlennDane Adapt and Conquer

Tanner Rico

Living with Duchenne