Cart
×
Duchenne: An Overview for Educators
This resource provides multiple handouts to help inform your child’s educator of the specialized needs in a school setting.
Duchenne: Una Visión General Para Educadores
Este recurso proporciona varios folletos para ayudar a informar al educador de su hijo sobre las necesidades especializadas en un entorno escolar.
CureDuchenne
Video
Emergency Care
This resource presents information on emergency care guidelines for individuals with Duchenne, and tips on how to communicate with emergency care providers in the event of an urgent hospital visit.
Stefan Malin, MD, MS
Pediatric Critical Care Fellow
Riley Hospital for Children at IU Health
Video
Emergency Care Considerations for Individuals Living with Duchenne
This resource offers information for parents, caregivers and individuals with Duchenne about the specialized aspects of emergency care for those with Duchenne.
CureDuchenne
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
Umme Vahanvaty, MS, RD, CS
Registered Dietitian Nutritionist
Children’s Hospital of Los Angeles
Video
Exon Skipping and Read Through Agents Panel
A brief introduction on the rationale behind mechanisms of endogenous dystrophin restoration, like exon skipping and read through agent therapies, followed by critical information and updates from the companies in this space. Moderated discussion included.
Barry Byrne, MD, PhD
Professor and Associate Chair
University of Florida, Department of Pediatrics
Brett Crawford, PhD
Executive Director and Head of the Musculoskeletal Therapeutic Area
BioMarin Pharmaceutical Inc.
Mark Stahl, MD, PhD
Senior Medical Director, Clinical Development
Avidity Biosciences
Deanna Tucker, PharmD
Senior Medical Science Liaison
Sarepta Therapeutics
Video
FibroGen
FibroGen Industry Presentation
Bassem Elmankabadi, MD, ABWS
Executive Medical Director, Clinical Development (Fibrosis/Oncology)
FibroGen
Video
Financial Resources Presentation
This resource provides financial assistance resources like government programs, waivers, savings accounts, and nonprofit support for families navigating Duchenne.
Amy Aikins, CRS A/D
Director, Government and Social Programs
Little Hercules Foundation | Duchenne Family Assistance Program
Video
