BOARD OF DIRECTORS
Michele Herndon, DNP, RN
St. Louis, Missouri
Michele Herndon, DNP, RN most recently was the Director of Support for the Undiagnosed Diseases Network Foundation. Prior to this role, she worked for 18 years as a pediatric nurse, leader, and program manager at St. Louis Children’s Hospital. She is also the co-founder and Vice-President of The Mitchell and Friends Foundation, an organization determined to support families and raise both awareness and money for research into an ultra-rare disease–Mitchell Syndrome. A newly discovered disease, Mitchell Syndrome was named after Michele’s oldest son, Mitchell, who died in 2019 at the age of 19. This ultra-rare neuromuscular disease has symptoms and imaging findings that are very similar to more well-known leukodystrophies. Mitchell was the first patient identified in 2018, the first journal article on the disease was published in 2020, and now the foundation is aware of nearly 30 patients worldwide. Michele is working with a team of researchers at Washington University School of Medicine to publish a retrospective natural history study on Mitchell Syndrome and develop treatments for the disease. Michele and her husband live in St. Louis, MO. They love spending time with family and friends and are very active in their local church community.