Who is developing and manufacturing the NKH gene therapy?

EmetAbba has many hands behind it. The foundation's research page describes its 2019 DRF Gene Therapy Project with the Steven Gray Lab at UT Southwestern. Over the years the family says they partnered with research teams around the world before finding the right combination.

Per the family, the therapy is being manufactured with Andelyn Biosciences, a gene therapy manufacturing organization in Columbus, Ohio, with a second facility handling the final vial filling. In August 2026, the Andelyn Foundation's Fore One Purpose golf tournament named Drake and Vivian its Impact Champions and raised $50,000 for the project.

The trial is planned at the Medical University of South Carolina (MUSC) in Charleston, with a clinician experienced in both NKH and gene therapy, according to the family.

Research partnerships often come with confidentiality agreements, so the family can't share every detail publicly. For specific questions, contact [email protected]. The most important partners in this project, though, are ordinary people who give and share. See who's already joined, and add your name.

Sources: Saving Drake and Vivian (GoFundMe updates)