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

Panel de discusión: El impacto de Duchenne en la familia

Este panel discutirá los portadores genéticos de Duchenne, cómo comunicar el diagnóstico a otros y las experiencias con la planificación familiar.

Gloria Orozco

Presidenta, Coalición Latinoamericana DMD/DMB

Coalición Latinoamericana DMD/BMD

Graciela Méndez

Fundadora

Enlace Distrofia Muscular Duchenne Becker AC​

Sarah G. Seth, MPH, CGC

Consejera Genética Certificada

Hospital de Niños de San Antonio