Art for Change

In 2011, my son Alex was diagnosed with a rare brain tumor, craniopharyngioma. Following surgery, our lives were transformed by the long-term consequences of the disease, including hypothalamic obesity and hyperphagia—conditions with few effective treatments and profound impacts on quality of life.

Driven by love for my son and a determination to improve his future, I became an advocate, blogger, and researcher. An experimental treatment using oxytocin that I conducted for Alex led to the publication of a case study in the Journal of Clinical Endocrinology & Metabolism. In 2020, I joined the Board of Directors of the Raymond A. Wood Foundation (RAWF), where I continue to work to improve the lives of hypothalamic-pituitary brain tumor survivors and their families.

Along the way, I discovered painting and documentary filmmaking as powerful tools for advocacy. Through art, I seek to make visible the often-unseen experiences of patients and caregivers, foster empathy, and inspire action. My work is rooted in the belief that storytelling can illuminate the human side of rare disease and help build a future with greater awareness, better treatments, and stronger support for those whose lives have been forever changed.

Besides my work with rare disease, I work as a clinical psychologist, organize community music and arts events, sing in a jazz choir and sing and play bass in two rock bands.