Dancing in the Face of Death

A story of choosing love, integrity, and courage when life changes everything

When Susan's partner, Barbara, was diagnosed with the behavioral variant of frontotemporal dementia (bvFTD), a fatal genetic brain disorder, life as they knew it took an unexpected turn. In Dancing in the Face of Death, Susan encapsulates their journey through this life-changing diagnosis, beautifully weaving together the challenges of caregiving and illness with the power of love and living intentionally.

This intimate memoir follows Barbara's experience as the first person in the US to receive a gene replacement in her brain as part of an FTD clinical trial. Even as Susan and Barbara navigated the changes and challenges brought by this disease, they continued to live with integrity, commitment, and courage. Susan captures both the most heartbreaking and heartwarming moments of their life together while also shining a light on the difficulties of anticipatory grief as a loved one changes before your eyes.

Dancing in the Face of Death is both a celebration of Barbara's fight for a cure and an effort to raise awareness for FTD, a condition that is often misdiagnosed and inaccurately treated. Susan and Barbara's story is a testament to how strength, devotion, and love endure-even in the face of loss.