I developed Rare Diseases while working for BC&BC in 2001 & have had several brain & total rebuilt c-spine surgeries. I knew I had to help others to get a piece of myself back so I started volunteering on a Chiari Malformation Forum & became Dir. of Mem. Ser. for the whole Rare Disease Community. I was invited to work w/ Lily COI & have been on several EPatient panels & projects. I work with CureClick, AstraZeneca on Patient Centricity, Lobby for Rare Diseases & HC, Founded Patients for Clinical Research & became a Health Expert for WEGO Health. In 2013 I was named a Stanford MedX EPatient Scholar & joined the Society for Participatory Medicine where I volunteer & am on the Board.
I’m a Patient Leader