Growth and Transformation - diagnosed 3-6 years

Community of Caregivers

An interactive discussion on the unique journey of caregivers, and tools to unite and strengthen the Duchenne community in their shared experience.

Laura McLinn

Founder

Best Day Ever Foundation

Marissa Penrod

Co-Founder

The Duchenne Family Assistance Program

Leslie Porter

Family, Duchenne Advocate

Family, Duchenne Advocate

Comunidad de cuidadores

Una discusión interactiva sobre el viaje único de los cuidadores y herramientas para unir y fortalecer a la comunidad de Duchenne en su experiencia compartida.

Laura McLinn

Founder

Best Day Ever Foundation

Marissa Penrod

Co-Founder

The Duchenne Family Assistance Program

Leslie Porter

Family, Duchenne Advocate

Family, Duchenne Advocate

Conectando familias con la investigacion

El enfoque del seminario web de hoy es ayudar a educar y conectar a las familias con el panorama de los ensayos clínicos.

Amaris Sánchez-Larragoity, PsyD

Psicóloga licenciada

Diana Castro, MD

Associate Professor of Pediatrics, Neurology and Neurotherapeutics

University of Texas Southwestern

Creative Inclusivity

An interactive presentation focused on harnessing creativity in day-to-day life with inclusive activities, games and exercises, as well as utilizing adaptive technology/equipment to surpass expectations.

Jennifer Wallace Valdes, PT

CureDuchenne Certified Physical Therapist

CureDuchenne Physical Therapy Program

Danielle Forrest, OTR, OTD

Occupational Therapist III

Children’s Health and Rehabilitation Services

Austin Edenfield, ATP

Quantum Product & Technical Education Manager

Pride Mobility

CureDuchenne 2022 Priorities: Research for a Cure and Care for our Community

 

Paul, Debra and Hawken Miller discuss FUTURES 2022, current advancements in therapies and next generation investments as well as programs CureDuchenne offers to improve the quality of life for those impacted by Duchenne.

Debra Miller and Paul Miller

Founders

CureDuchenne

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

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