At 38 she was diagnosed with Klippel-Feil Syndrome after a lifetime of health related issues. She was then diagnosed with Ehlers-Danlos Syndrome, Cervical Dystonia and previously Vasculitis. These are all rare conditions. Six years later, she advocates actively for much needed treatments and understanding of Rare Diseases. She founded Klippel-Feil Syndrome Freedom. Her motto: Be a change-maker.