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Today is Vivian Faye’s Third Birthday...a birthday we were told she would never see. A birthday a few days ago, we were not sure if we...
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
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).
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.
Tarah O’Sullivan, 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.
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
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