Beginning the Duchenne Journey 

From FUTURES 2023

 

  • Coping as a Caregiver
  • Communicating Duchenne to your child/family
  • ​Preparing for a bright future: play, communicate, and appropriate exercise
  • Neurological concerns
  • Introducing Stretching and Equipment
  • Role of Social Work
  • Duchenne’s Impact on Nutritional Health and Habits

Kayla Richards, LMSW

Social Worker

UT Health Austin Pediatric Neurosciences at Dell Children's

See more from same speaker

Doug Levine, PT

CureDuchenne Certified Physical Therapist

CureDuchenne

See more from same speaker

Leslie Porter

Family, Duchenne Advocate

Family, Duchenne Advocate

See more from same speaker

Diana Castro, MD

Associate Professor of Pediatrics, Neurology and Neurotherapeutics

University of Texas Southwestern

See more from same speaker

Kindann Fawcett, PhD

Post Doctoral Fellow

University of Arkansas for Medical Sciences

See more from same speaker

Video
Share this:
Beginning the Journey - diagnosed 0-3 yearsGrowth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years

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

See more from same speaker

Marissa Penrod

Co-Founder

The Duchenne Family Assistance Program

See more from same speaker

Leslie Porter

Family, Duchenne Advocate

Family, Duchenne Advocate

See more from same speaker

Video
Share this:
Beginning the Journey - diagnosed 0-3 yearsGrowth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years

Involucrarse con CureDuchenne

Una cálida bienvenida del equipo de CureDuchenne y unas palabras de algunas familias campeonas de CureDuchenne sobre cómo lograron el éxito en la recaudación de fondos al unir a su comunidad.

Paul and Laura Heaton

Calves to Cure DMD

See more from same speaker

Tim and Laura Revell

CureDuchenne Champion Family

See more from same speaker

Video
Share this:
Beginning the Journey - diagnosed 0-3 yearsGrowth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years

Inclusión creativa

Una presentación interactiva enfocada en aprovechar la creatividad en la vida cotidiana con actividades, juegos y ejercicios inclusivos, además de utilizar tecnología/equipos adaptables para superar las expectativas.

Jennifer Wallace Valdes, PT

CureDuchenne Certified Physical Therapist

CureDuchenne Physical Therapy Program

See more from same speaker

Danielle Forrest, OTR, OTD

Occupational Therapist III

Children’s Health and Rehabilitation Services

See more from same speaker

Austin Edenfield, ATP

Quantum Product & Technical Education Manager

Pride Mobility

See more from same speaker

Video
Share this:
Beginning the Journey - diagnosed 0-3 yearsGrowth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years

Vinculando a la comunidad a una cura

CureDuchenne Link es un centro de datos centralizado que combina datos clínicos, biomuestras y datos informados por pacientes para personas con distrofia muscular de Duchenne y Becker, así como portadores. La información y las muestras proporcionadas por los participantes están codificadas y disponibles para su uso por investigadores aprobados en todo el mundo.

Ana Christensen, MPH

Lead Project Manager, Strategic Solutions

TRiNDS

See more from same speaker

Video
Share this:
Beginning the Journey - diagnosed 0-3 yearsGrowth and Transformation - diagnosed 3-6 yearsSpreading Wisdom - diagnosed 6+ years

Más allá de la distrofina

Esta sesión de la conferencia brinda información sobre las terapias emergentes más allá de la restauración de la distrofina, así como actualizaciones/anuncios de las empresas en este espacio.

Han Phan, MD

Director

Rare Disease Research, LLC

See more from same speaker

Mindy Cameron

Patient Advocacy Lead

Santhera Pharmaceuticals

See more from same speaker

Matthew Klein, M.D., M.S., FACS

Chief Operating Officer

PTC Therapeutics

See more from same speaker

Abby Bronson

Vice President, Patient Advocacy & External Innovation

Edgewise Therapeutics

See more from same speaker

Daniel Paulson, MD

Vice President of Clinical Development

Capricor Therapeutics

See more from same speaker

Video
Share this:
Spreading Wisdom - diagnosed 6+ yearsGrowth and Transformation - diagnosed 3-6 years

Pilares del viaje temprano

Esta sesión está dirigida a familias/cuidadores de niños y adolescentes con Duchenne. Cubre cuatro pilares del viaje temprano de Duchenne: atención multidisciplinaria, esteroides, nutrición y participación en ensayos clínicos, y es seguido por una sesión de discusión/preguntas y respuestas.

Kindann Fawcett, PhD

Post Doctoral Fellow

University of Arkansas for Medical Sciences

See more from same speaker

Barry Byrne, MD, PhD

Professor and Associate Chair

University of Florida, Department of Pediatrics

See more from same speaker

Dr. Aravindhan Veerapandiyan

Pediatric Neurologist

Arkansas Children's Hospital

See more from same speaker

Diana Castro, MD

Associate Professor of Pediatrics, Neurology and Neurotherapeutics

University of Texas Southwestern

See more from same speaker

Video
Share this:
Beginning the Journey - diagnosed 0-3 years