The Life-Changing Power of a Clinical Trial, from a Caregiver's Perspective

As the father of a son who is impacted by a rare disease, Justin brings a wealth of personal and professional experience to the table when it comes to serving the rare disease community. Justin and his wife Courtney, have three children—Garrett, Avery, and Grady. Garrett was diagnosed with acid sphingomyelinase deficiency (ASMD, also historically known as Niemann-Pick disease) around his first birthday. Over six years, the Hopkin family and friends hosted an annual Golf For Garrett tournament that raised $150,000 for ASMD research. A standout athlete, Justin played two years of college basketball during his undergraduate studies at the University of Wyoming. He completed medical school at the University of Washington, was a resident at the University of Colorado, and ascended to the title of chief resident. During his eight years in Wyoming, Justin had the pleasure of teaching medical students, working in public health, and providing comprehensive medical care at a critical access hospital. Though Justin returned home to Wyoming following medical school and residency to practice inpatient and outpatient medicine in a rural, medically underserved community, his quest to find a clinical trial for Garrett moved the Hopkin family from Wyoming to Rochester, New York. Justin is currently the Chief, Division of Hospital Medicine at Strong Memorial Hospital in Rochester where he leads a distinguished group of hospitalists that are excelling in the areas of patient care, scholarship, and medical education. He is also thankful for the opportunity to work with the medical students and residents at the University of Rochester. Prior to joining the Uplifting Athletes board, he served as the Board Chair of the National Niemann-Pick Disease Foundation.

Adrelia Allen, PharmD, is a 22-year veteran of the pharmaceutical industry working in sales and clinical research at Merck. She has held positions of increasing experience as a Clinical Research Associate, Clinical Trial Project Manager, and Clinical Research Manager (CRM). She is currently the Executive Director of Clinical Trial Patient Diversity, where she is responsible for the strategy and execution of activities for the diverse representation of patients in clinical trials. Dr Allen has a Doctor of Pharmacy degree from Florida A&M University College of Pharmacy.