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).  

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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. 

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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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).  

 

Stay Connected

Never miss an update.  Follow and Like our 

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track our journey.  

Get Event Updates,

Research Progress, and 

Follow Drake and Vivian's Progress. 

 

Subscribe to our YouTube Channel  'Saving Drake'

and get special video

updates and behind the 

scenes footage. 

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Our goals are big.....and our God is enough.

Drake Rayden Foundation

501(c)(3) Non Profit

EIN 82-2383660

Our Mission

Our mission is to bring hope through the gospel, raise awareness and funds for better treatment for NKH, and care for special needs families. 

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Mailing Address:

2607 Woodruff Road,

Suite E, PMB 352

Simpsonville, South Carolina

United States, 29681

© 2020 by Drake Rayden Foundation.