2022 FUTURES Annual Conference
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.
CureDuchenne Link is a centralized data hub which combines clinical data, biosamples, and patient reported data for individuals with Duchenne and Becker muscular dystrophy, as well as carriers. Information and samples provided by participants are coded and available for use by approved researchers across the world.
A brief overview of the rationale behind next generation technology, as well as presentations from the companies in this space. Moderated discussion included.
This session is intended for families/caregivers of children and adolescents with Duchenne. It covers four pillars of the early Duchenne journey: Multidisciplinary Care, Steroids, Nutrition, and Involvement in Clinical Trials, and is followed by a discussion/Q&A session.
Professor and Associate Chair
University of Florida, Department of Pediatrics
Associate Professor of Pediatrics, Neurology and Neurotherapeutics
University of Texas Southwestern
Post Doctoral Fellow
University of Arkansas for Medical Sciences
This session is intended for families/caregivers of teens and adults with Duchenne. It covers four pillars of the transitional Duchenne journey: Continuity of Care, GI-related Care, Medical Privacy, and School/Career/Hobbies, and is followed by a discussion/Q&A session.
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
Director, Payer Relations
Little Hercules Foundation
Pediatric Gastroenterologist
Nationwide Children's Hospital
An interactive presentation focused on defining and building your team at school, addressing the nuances of an IEP or 504 plan for an individual with Duchenne, and a role-playing exercise on how to effectively communicate your family’s needs in a school meeting.
Duchenne Mother, Grandmother and Advocate
4 Jake's Sake | CureDuchenne
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.