Beginning the Journey - diagnosed 0-3 years

Success at School

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.

Doug Levine, PT

CureDuchenne Certified Physical Therapist


Jennifer Ramirez

Executive Director of Special Programs

Belton ISD

Sheryl Marrazzo

Duchenne Mother, Grandmother and Advocate

4 Jake's Sake | CureDuchenne

The Benefits of Corticosteroids Along the Duchenne Journey

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.

Sheryl Marrazzo

Duchenne Mother, Grandmother and Advocate

4 Jake's Sake | CureDuchenne

Dr. Aravindhan Veerapandiyan

Pediatric Neurologist

Arkansas Children's Hospital

The Family’s Role in Research Panel

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.

Matthew Alexander, PhD

Assistant Professor in Pediatric Neurology and Genetics

Children’s of Alabama | University of Alabama at Birmingham

Diana Castro, MD

Associate Professor of Pediatrics, Neurology and Neurotherapeutics

University of Texas Southwestern

Tiffany Cook, MS, CCC-SLP

Senior Director

CureDuchenne Cares

Joanna Kemp, BSN, RN

Senior Director of Clinical Operations | Director, CureDuchenne Link


Lauren Morgenroth, MS, CGC

Chief Operating Officer


Clint & Leslie Porter

CureDuchenne Champion Family

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