top of page
Home
DrakeRaydenFoundation New 2022.jpeg
golf ball on tee in a beautiful golf course with morning sunshine.Ready for golf in the fi

May 5, 2023

TRANSPARENT
About NKH

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

Join our mailing list

Thanks for subscribing!

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).  

Abstract%2520luminous%2520DNA%2520molecu

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