Eric and Tarah O'Sullivan formed
the Drake Rayden Foundation
after their youngest son, Drake Rayden, and subsequently their youngest daughter, Vivian Faye, were both diagnosed with an extremely rare, terminal metabolic disease called
NonKetotic Hyperglycinemia, or NKH.
Vivian Faye O'Sullivan
Drake Rayden O'Sullivan
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
Treatment Saves Children's Lives
The Drake Rayden Foundation focuses our NKH Research Philanthropic Funding on a methodology we call Treatment Centered Research. Too often research focuses on publishing papers, studying disease pathology, and filling books. Books sitting on shelves do not save children’s lives... treatments do. Treatment Centered Research (TCR) is our number one focus, and the only way to bring change to a disease that has not seen treatment advances in the past 30 years.
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OUR FOCUS
Non Ketotic Hyperglycinemia is a cruel, terminal pediatric disease that steals the life from the very children it in dwells.
Treatment is slowed by governmental funding being very limited. This means the burden of raising funds for research falls to the families of these medically fragile children.
The Drake Rayden Foundation fights to ease this burden and give these families hope.
Being involved in the research is simply not enough, we aim to direct it.
By supporting our efforts you give us the tools to fund and be immersed in the most advancing sciences.
Drake Rayden Foundation
fiercely pursues the most advanced, progressive treatment in the
research field for
children suffering with
Non Ketotic Hyperglycinemia (NKH).
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