Four-year-old Zoe loves puzzles, bike rides, and the Disney movie Frozen, while 11-year-old Isabel adores horseback riding, Minnie Mouse, and her two younger siblings. Though from different families, Zoe and Isabel share more than their vibrant and determined personalities—they are both navigating life with betapropeller protein-associated neurodegeneration (BPAN), a rare and progressive neurodegenerative disease.
Over time, children with BPAN gradually lose the skills they worked so hard to gain, developing dystonia, parkinsonism, and dementia. Both families were determined to find answers and a path forward after their daughters’ diagnoses.
“We learned that because BPAN is rare, it’s considered an ‘orphan disease,’ ” say Isabel’s parents, Kathryn and Robert. “Few doctors even knew about it, and there was almost no research being done to develop treatments.”
In response, the couple launched Isabel’s Chance, a nonprofit dedicated to raising funds for BPAN research.
Zoe’s parents, Sherri and Peter, were also determined to take action. They turned to Juliet Knowles, MD, PhD, a physician scientist at Stanford who had cared for Zoe. “We weren’t going to accept that no treatments existed,” they say. “Thankfully, Dr. Knowles shared our urgency and passion for finding solutions.”
Sherri and Peter were joined by Isabel’s Chance in making a significant gift to begin Knowles’ work in the fight against BPAN. Knowles assembled a world-class research team to study BPAN in human-derived cells and animal models, putting together a first-of-its-kind plan to identify potential treatments that could move quickly to clinical trials.
Beyond supporting Knowles’ pioneering BPAN research, Zoe’s and Isabel’s families have become tireless advocates, sharing their stories and this critical work with their networks. Thank you, Sherri, Peter, Kathryn, and Robert! Your dedication is accelerating progress toward potential BPAN treatments and offering hope to families like yours.
