Who We Are

Summary: Melody Kisor, MS, is a bioethicist and health advocate with a specialty in maternal/child health and rare neurological disorders. She loves to use her bioethics skills to amplify the patient/caregiver voice, often serving as a liaison between patients, clinicians, and researchers. Melody’s most recent work in rare has included creating and curating patient resources, FDA advocacy, and planning patient-centric education and events.

Professional: Melody earned a Master of Science in Biomedical Ethics from Albany Medical college, with a concentration in maternal/child and genetic ethics. She also has earned a Bachelor of Arts in Interdisciplinary Health Studies from Hampshire College, and a Specialized Certificate in Perinatal Health Education from the University of California San Diego Extension. Melody started her career in birth defects surveillance and research, working on projects at the Massachusetts Department of Public Health (in collaboration with CDC), UCSD Teratology (in collaboration with Boston University), and the Naval Health Research Center (in collaboration with the Department of Defense). Although the majority of her professional work has been in public health and perinatal health education, her most personally and professionally rewarding work has been in rare advocacy.

Personal: The credential that Melody is most proud of is Mama Bear, and the joy of her life has been being a mom to two amazing neurodivergent children. She is a ferocious advocate for all children, and also a fierce aunt, fighting to ensure that her nieces and nephews are spared from the suffering of the adult-onset leukodystrophy that took the life of her oldest brother. These life experiences fuel the empathy and passion to drive ambitious projects forward. When not working, Melody can be found snuggling her dogs, watching British police procedurals with her husband, playing NYT games with her daughter (Connections goddess!), or reading one of her son’s latest comedy scripts.

Networking: Melody is an introvert at heart (INFJ – “The Advocate”) but also a professional extrovert at work (lovingly called “Cupid” by her colleagues). As a 25+ year Navy spouse, she has had the privilege of meeting and cultivating strong relationships with a worldwide network of talented and creative individuals.

SCN2A: Through her work with Cure LBSL (another CZI Rare As One grantee), Melody had the joy of meeting Leah Schust Myers, Jenny Burke, & Shawn Egan. It’s a true honor to join this team and help support the incredible work of FamilieSCN2A Foundation!