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.

Jeffrey M. Statland, MD

Professor of Neurology

University of Kansas Medical Center

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Kelli Reiling Ott

Clinical Assistant Professor

University of Kansas Medical Center

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Vincent Czerwinski, MD

Medical Student

University of Kansas Medical Center

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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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Growth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years

2019 FUTURES: FRIENDS Panel

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

Hawken Miller

Content Strategist

CureDuchenne

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Doug Levine, PT

CureDuchenne Certified Physical Therapist

CureDuchenne

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Holly Van Meeteren, OTR/L

Occupational Therapist

Tustin Unified School District

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Tiffany Cook, MS, CCC-SLP

Senior Director

CureDuchenne Cares

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Benjamin Tilford

Program Lead

Assistance League of Tustin: Assisteens® Buddy

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Growth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years

Estándares Nutricionales para el cuidado de La Distrofia Muscular de Duchenne

Esta presentación se centra en las pautas nutricionales para las personas con distrofia muscular de Duchenne.

Lucia Briceno MS, RDN, CSP, CNSC

Dietista Nutricionista Registrada

Children's Hospital of Los Angeles

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Umme Vahanvaty, MS, RD, CS

Registered Dietitian Nutritionist

Children’s Hospital of Los Angeles

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Beginning the Journey - diagnosed 0-3 yearsGrowth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years

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

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Graciela Méndez

Fundadora

Enlace Distrofia Muscular Duchenne Becker AC​

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Sarah G. Seth, MPH, CGC

Consejera Genética Certificada

Hospital de Niños de San Antonio

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Beginning the Journey - diagnosed 0-3 yearsGrowth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years