Why does the NKH gene therapy trial cost $1.6 million?

Gene therapy is among the most complex medicine in the world to produce. Each batch of an AAV therapy has to be manufactured in specialized clean facilities, purified, filled into vials, and tested extensively for quality and safety before it can be given to a child. For a rare disease, there's no large company spreading those costs over thousands of patients.

The family has shared that EmetAbba's manufacturing runs across two facilities, with the second filling the vials. On top of manufacturing come the clinical costs of a carefully monitored first-in-human trial.

The total the family needs for Drake and Vivian's trial is $1.6 million. Thanks to thousands of people, events, and partners, more than $1.25 million had been raised by late October 2026. As of mid-November, the remaining gap was roughly $252,000. The foundation posts the current number weekly.

Importantly, this isn't money for a someday project. As the family puts it, they are fundraising while paying for work that's happening right now. Help finish the last stretch.

Sources: Saving Drake and Vivian (GoFundMe updates)