Danny is the father of two boys with MEPAN Syndrome – a rare neurodegenerative mitochondrial disease caused by mutations in the MECR gene. Since 2012 he has immersed himself in genetics and rare disease research in an effort to help his sons. They were diagnosed with MEPAN in 2018 via whole genome sequencing through the National Institute of Health’s Undiagnosed Diseases Network. With no proven treatments available, Danny established the MEPAN Foundation to broaden the knowledge and understanding of the condition and fund research to help MEPAN patients and others suffering from similar rare disorders.
Danny has nearly 20 years of experience in marketing and communications, and now works as a consultant helping rare disease companies with patient advocacy communications, clinical trial recruitment and disease education. His background has also helped him create awareness for his son’s condition, and the story of his family’s diagnostic odyssey has appeared in news outlets such as NPR, Stanford Magazine, and CBS Morning News. Danny serves on Global Genes’ RARE Foundation Alliance Leadership Council, and has a B.A. in history from the University of Florida.
