Saving Drake And Vivian Video
Events
Join us for Looking Up & Counting Down, a special evening celebrating just how far we’ve come—and how close we are to bringing gene therapy to Drake and Vivian.
We’ll share exciting updates, the progress happening behind the scenes, and what remains as we work to finalize the funding needed to reach treatment.
Come enjoy an evening of hope, gratitude, fellowship, and anticipation as we look up with faith and count down the final steps toward a moment ten years in the making.
FREE TO ATTEND, REGISTRATION REQUIRED.
WHAT IS NON KETOTIC HYPERGLYCINEMIA, NKH?
NKH is an extremely rare, metabolic disorder caused by a mutation in a child’s DNA. The mutation/s cause the system that facilitates glycine breakdown, and utilization, to become incompetent.
Children with the severe form of NKH, comprising close to 85% of diagnosed,
often live days/weeks after birth.
Children live with severe seizure disorders, and a very poor prognosis.
More Information:
NIH: Genetic and Rare Diseases /
Glycine Encephalopathy
2026 NKH
Gene Therapy
Clinical Trial
Gene Therapy for Non Ketotic Hyperglycinemia, NKH
In 2019, the Drake Rayden Foundation partnered with the Steven Gray Lab at the University of Texas Southwestern, UTSW for a two year project, to create a gene replacement therapy for the terminal, rare disease NonKetotic Hyperglycinemia, or Glycine Encephalopathy.
Gene Therapy offers a curative effect to many rare orphan diseases.
Thank You to Our Partners:
Stay Connected
Like to stay up to date? Check our socials and
make sure you sign up to receive updates
straight to your email here!
Blog Updates
