The Zebra & the Bear

Filmed over seven years, The Zebra & the Bear is an intimate and impactful documentary film about how a mother’s fierce determination to save her daughter from a fatal ultra-rare disease leads her on a journey to raise millions of dollars and drive the development of a pioneering gene-therapy treatment. When their daughter Willow was diagnosed with Multiple Sulfatase Deficiency (MSD) in 2016, Amber and her husband Tom were told that there was no cure or treatment, and that their daughter would likely die before her tenth birthday. Determined to save Willow’s life, Amber and Tom begin years of staggeringly difficult work to fund and manage a cutting-edge gene therapy research project that eventually leads to MSD being selected for the NIH’s new Bespoke Gene Therapy Consortium to develop treatments for rare genetic conditions in 2023. The NIH Bespoke grant announcement is a real victory that will potentially lead to a gene therapy treatment for this terrible disease. Unfortunately, we learn at the end of the film that Willow has passed away before any clinical trials would have been approved, but her legacy will live on and may save the lives of future generations of children unlucky enough to be born with MSD.