Title: Senior Director
Organization: CureDuchenne Cares
Bio: Tiffany Cook, MS, CCC-SLP is a nationally certified Speech-Language Pathologist with over twenty years of experience in the public-school setting. Tiffany’s son, Wil, was diagnosed with Duchenne in 2007, and subsequently, she was confirmed as a carrier. As the Senior Director of CureDuchenne Cares, Tiffany is dedicated to helping families and others within the community to find the silver linings. Tiffany resides in Dallas with her husband, son, and daughter.
This panel discusses inclusivity and the importance of meaningful relationships for individuals with Duchenne.
Occupational Therapist
Tustin Unified School District
Program Lead
Assistance League of Tustin: Assisteens® Buddy
Focused on cognitive abilities and psychological wellness in individuals living with Duchenne.
Visiting Assistant Professor, Department of Pediatrics, Divisions of Pediatric Neurology, Psychiatry and Behavioral Health
University of Utah
Occupational Therapist III
Children’s Health and Rehabilitation Services
Assistant Professor of Neurology
Virginia Commonwealth University
Focused on the intersection between physical needs and living a fulfilling life.
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
Associate Professor of Pediatrics
University of California San Francisco Benioff's Children's Hospitals
Professor of Pediatrics and Neurology and Director
UMass Duchenne Muscular Dystrophy Program at the University of Massachusetts Medical School
Focused on engaging families in conversations about the load they carry and how to manage life as a caregiver.
Social Worker and Neuro-behavioral Health Specialist
University of Utah Health
Professor of Pediatric Pulmonary and Sleep Medicine
Duke University
Focused on empowering families to make informed decisions about their child’s care / personal care across all junctures of the Duchenne journey.
Child Neurologist and Neuromuscular Section Head
Children’s Hospital of Philadelphia
Duchenne Mother, Grandmother and Advocate
4 Jake's Sake | CureDuchenne
Advanced Practice Nurse, Neuromuscular Program
Department of Pediatrics, University of Iowa Stead Family Children’s Hospital
CureDuchenne Certified Physical Therapist
CureDuchenne Physical Therapy Program
This panel discussion provides a robust conversation about how clinical trials intersect with family life in the Duchenne community.
This webinar, in partnership with the University of Kansas Medical Center, explores topics like achieving milestones, quality of life, and setting goals in families navigating Duchenne muscular dystrophy. The panelists also discuss how to incorporate quality of life metrics into clinical care.
Professor of Neurology
University of Kansas Medical Center
Clinical Assistant Professor
University of Kansas Medical Center
Medical Student
University of Kansas Medical Center
This resource discusses managing Duchenne in a school setting: IEP vs. 504 Plans, modifications and accomodations in a school setting, and communicating with educators about Duchenne.
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
