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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

 
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 $179,950.00 to date

for Treatment Driven Research for children

with NonKetotic Hyperglycinemia, (NKH).  

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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
 

Tarah OSullivan, mother of two children with a rare genetic disease, has returned to school at Clemson determined to help children with rare genetic diseases. And to save her own.

Clemson Drake Rayden Foundation

Read about the Drake Rayden Foundation in an eight page, featured article,

THE FACE OF SCIENCE, 

in the  Clemson World Magazine

published January 2, 2020. 

Winter 2020 Vol 74

Clemson Drake Rayden Foundation
 

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