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 is joined by Dr. Aravindhan Veerapandiyan, a Pediatric Neurologist from Arkansas Children’s Hospital, and Sheryl Marrazzo, a mother, grandmother and advocate in the Duchenne Community, for a 1-hour webinar on corticosteroids. This webinar discusses the role of corticosteroids in the Duchenne standards of care, highlights the effects of steroids after loss of ambulation, and includes a discussion on how corticosteroids play a role in the family unit over time.
Duchenne Mother, Grandmother and Advocate
4 Jake's Sake | CureDuchenne
Pediatric Neurologist
Arkansas Children's Hospital
A deep dive into the world of clinical and academic research, including input from multiple stakeholders, with the family at the center of it all.
Assistant Professor in Pediatric Neurology and Genetics
Children’s of Alabama | University of Alabama at Birmingham
Associate Professor of Pediatrics, Neurology and Neurotherapeutics
University of Texas Southwestern
Senior Director of Clinical Operations | Director, CureDuchenne Link
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.
