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May 5, 2023

About 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

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Our Impact
Drake Rayden Foundation helping families with special needs.

Due to lack of governmental funding for NKH, most of the funding comes from the families affected.

The Drake Rayden Foundation has funded $294,016.10 to date
for Treatment Driven Research for children
with NonKetotic Hyperglycinemia, (NKH).  


Gene Therapy

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. 

UTSW and the Drake Rayden Foundation Gene Therapy
NKH Research