Where and when is the NKH gene therapy trial for Drake and Vivian?

According to the family, Drake and Vivian's gene therapy trial is planned at the Medical University of South Carolina (MUSC) in Charleston, with a clinician who has experience in both NKH and gene therapy. The family has described it as the first sibling study for an NKH gene therapy.

The target is late 2026; recent family updates have pointed to the end of this year. Like any first-in-human trial, the timing depends on several things coming together: the final stages of manufacturing, the necessary regulatory and hospital approvals (which the family has said they are working tirelessly to secure), and full funding.

That last piece is where the public comes in. The foundation pays the manufacturers as donations come in, and the family has been clear that if funding stops, the work stops. Every gift keeps the schedule on track.

For questions about approvals or regulatory status, please contact Info@DrakeRaydenFoundation.com, as the family shares details as partners allow. To follow along, see how to track the trial's progress, or give today.

Sources: Saving Drake and Vivian (GoFundMe updates)