Rare Disease Advisory Council Members

Sonya Addison, MD 

  • Endocrinologist
  • Boone Health Diabetes & Endocrinology
  • Columbia, MO

Shivarajan Manickavasagam Amudhavalli

  • Clinical Geneticist
  • Children’s Mercy Hospitals and Clinics
  • Assistant Professor UMKC
  • Kansas City, MO

Rosemary Britts, MBA 

  • Executive Director, Sickle Cell Association
  • Florissant, MO

Jonathan D. Cooper, PhD 

  • Professor of Pediatrics, Genetics and Neurology
  • Pediatric Storage Disorders Laboratory (PDSL)
  • Washington University School of Medicine
  • St. Louis, MO

Stephanie Duehlmeyer, PharmD, BCPPS, AE-C 

  • Clinical Pediatric Pharmacy Specialist
  • Cystic Fibrosis/Pulmonology
  • Children’s Mercy Hospital 
  • Kansas City, MO

Jonathan Dyer, MD

  • Philip C. Anderson Endowed Chair in Dermatology
  • Director of Pediatric Dermatology
  • Chair of the Department of Dermatology
  • Professor of Dermatology 
  • University of Missouri
  • Columbia, MO

Sherry Graf, RN, BSN, MS, ACM, IQCI – Chair 

  • Director, Revenue Cycle Management 
  • Clinical Appeals
  • BJC HealthCare
  • St. Louis, MO

Jennifer Heeley, MD

  • Assistant Professor 
  • Department of Pediatrics, Genetics & Genomic Medicine 
  • Program Director, Categorical Genetics and Genomics Training Program
  • Washington University School of Medicine
  • St. Louis Children’s Hospital 
  • St. Louis, MO

Matthew McLaughlin, MD, MS

  • Divisions of Pediatric Rehabilitation Medicine and Clinical Pharmacology, Toxicology and Therapeutic Innovation 
  • Children’s Mercy Kansas City 
  • Associate Professor of Pediatrics, UMKC School of Medicine
  • Kansas City, MO

Fumihiko Urano, MD, PhD 

  • Professor of Medicine and Pathology and Immunology 
  • Samuel E. Schechter Endowed Professor in Medicine 
  • Attending Physician, Endocrinology Genetics Clinic 
  • Director, Wolfram Syndrome and related disorders clinic 
  • Director, Wolfram Syndrome and WFS1-related disorders International Registry and Clinical Study 
  • Director, Endoplasmic Reticulum Disease Registry and Biorepository 
  • Site Director, Rare and Atypical Diabetes Network (NIH U54) 
  • Steering Committee Member, Center for Rare, Undiagnosed & Genetic Diseases 
  • Core Director, Metabolic Tissue Function Core of the Diabetes Research Center (NIH P30) 
  • Washington University School of Medicine 
  • Barnes Jewish Hospital 
  • St. Louis, MO

Jon Wagner, DO, FAAP

  • Director, Division of Clinical Pharmacology, Toxicology and Therapeutic Innovation 
  • Matson Family Endowed Professorship in Cardiac Research 
  • Associate Program Director, Pediatric Clinical Pharmacology Fellowship 
  • Pediatric Clinical Pharmacologist, Department of Pediatrics 
  • Pediatric Cardiologist, Ward Family Heart Center 
  • Children’s Mercy Kansas City 
  • Associate Professor of Pediatrics, University of Missouri-Kansas City School of Medicine 
  • Kansas City, MO

Gerald J. Wyckoff, Ph.D. 

  • Professor and Chair, Division of Pharmacology and Pharmaceutical Sciences 
  • Director, Research and Graduate Studies 
  • Children’s Mercy Kansas City 
  • UMKC School of Pharmacy 
  • Kansas City, MO

Updated 09/03/2026