Progress, Potential, and Possibilities Podcast / Show Michele Herndon and Dr. F. Sessions Cole - Undiagnosed Diseases Network Foundation - Improving Access To Diagnosis, Research and Care For All With Undiagnosed And Ultra-Rare Diseases
The Undiagnosed Diseases Network Foundation ( https://udnf.org/ ) is a patient-led nonprofit organization founded in 2023 committed to improving access to diagnosis, research, and care for all with undiagnosed and ultra-rare diseases, with a focus on fostering collaboration among patients, clinicians, and scientists to enhance the quality of life of undiagnosed and ultra-rare disease patients and their families. Michele Herndon, MSN, RN, is the Program Director of the UDNF’s Patient Navigation Program. For the past two decades, she has served as a pediatric nurse, leader, and manager in an academic hospital setting. Michele is also the mother to Mitchell who enrolled in the UDN in 2017 after five years of symptoms. After genetic sequencing and a model organism study using fruit flies, his gene mutation was identified by the UDN. Mitchell died in 2019 from the ultra-rare disease that was ultimately named after him, Mitchell Syndrome. Michele and her family started the Mitchell & Friends Foundation to support families and raise both awareness and money for research into Mitchell Syndrome. Michele lives in St. Louis, MO and is currently working to complete her Doctorate in Nursing Practice at the University of Missouri-Columbia. Dr. F. Sessions Cole, MD is Board Secretary of UDNF and Professor of Pediatrics, Washington University School of Medicine. Dr. Cole is a neonatologist who began studying rare diseases with genomic methods during his fellowship in the laboratory of the late Harvey R. Colten, M.D. and has participated in the discovery of new genetic causes of structural birth defects and of respiratory failure in full-term infants, expanded phenotypes of known genetic diseases, and suggested novel therapeutic strategies. His research has been continuously supported by the National Institutes of Health (NIH) as a Principal Investigator for more than 25 years. Most recently, he led the NIH-funded Undiagnosed Diseases Network (UDN) Clinical Site at Washington University from 2018-2021. He currently co-chairs the UDN’s Sustainability Working Group and is leading the UDN’s Therapeutic Matching Committee aimed at identifying therapies for rare disease patients.