By Jason Mast and Matthew HerperJuly 9, 2026
Mast and Herper have covered rare disease issues for a combined three decades. As part of the reporting, Mast spent two days in the Bay Area with Matt Wilsey and Grace.
Highlights
Matt Wilsey has spent a decade and $70 million trying to develop a cure for his daughter Grace, who faces a fatal, ultra-rare disease.
His company has now treated 10 patients, including Grace, in a clinical trial but is out of money and still doesn’t have what the FDA says it needs for approval.
