Megan Leston is a mother to a child who lives with 5p- syndrome. She is a pediatric nurse practitioner with over a decade of experience working in a highly acute pediatric intensive care unit in a large city hospital. She went on to obtain her Masters in Science and pediatric nurse practitioner certification. She practiced in a urban hospital in the area of pediatric pulmonology. She specialized in asthma, have feer, bronchietcasis, primary ciliary dyskinesia, chronic lung disease, cystic fibrosis, sleep apnea etc. Personally, her life has been greatly impacted by rare disease. As mentioned, she specialized as a pediatric nurse practitioner in Cystic Fibrosis. She also had a sibling who lost their life to Spinal Muscular Atrophy. And, her oldest child lives with 5p- syndrome. She is highly driven to change the trajectory for those living with 5p- syndrome.