RESEARCH

CURRENT/ADVANCING 

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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 therapy project for the terminal, rare disease NonKetotic Hyperglycinemia, or Glycine Encephalopathy. The project is lead by Steven Gray, Ph.D, associate professor and expert in AAV gene therapy in the department of Pediatrics, Eugene McDermott Center for Human Growth and Development. Dr. Gray has pioneered gene therapy treatments for various neurological diseases.  At UT Southwestern he is overseeing one of the nations few facilities that manufactures a special type of gene-delivering virus for patient use.  

Watch the inspiring video of UTSW and their cutting edge gene therapy techniques helping families suffering terminal illnesses.

NKH Patient or Support Group

Would you like to stay up to date on our latest advancements and clinical trial registries for Non Ketotic Hyperglycinemia?  

 

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RESEARCH/NEWS 2018

AUGUST

 The Drake Rayden Foundation funded
$67,000.00 for NKH Research
at the University of Notre Dame,
Boler-Parseghian Center for Rare and Neglected Diseases

MARCH

Tarah OSullivan, representing the 

Drake Rayden Foundation

 

Was a guest speaker at the 10th Annual Conference on Advancing Rare Disease Research, Therapy, and Patient Advocacy.  

MARCH/APRIL

The Drake Rayden Foundation had the opportunity to have individual meetings with all three major researchers in the world.    We discussed research, the potential direction, and funding needed to obtain their vision.  

Nicholas Greene, PhD 
 
United Kingdom
Professor of Developmental Neurobiology
ICH Developmental Biology & Cancer Programme
UCL GOS Insitute of Child Health
Research Expertise : Development of Neural Tube Defects
Folate One-Carbon Metabolism
Genetics of early CNS malformations
Dr. Johan Van Hove, MD, PhD
United States
Professor of Pediatrics
Clinical Genetics, Biochemical Genetics
Children's Hospital Colorado
Kasturi Haldar, Ph.D
United States
Pathogenesis and Treatment of Rare and Neglected Diseases
Primary Research Areas:
Anatomy & Physiology
Cellular & Molecular Biology
Microbiology & Immunology
Neuroscience & Behavior
Kalipada Pahan, PhD
The Floyd A. Davis, MD, Professor of Neurology
Professor, Department of Neurological Sciences
Research Areas
Glial and neuronal cell signaling and neural stem cells differentiation with an emphasis to discover therapeutic strategies and drugs agains neuroinflammatory and neurodegenerative disorders, such as multiple sclerosis, Alzheimer's disease, Parkinson's disease, Batton Disease and HIV-associated neurocognitive disorders.

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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