RESEARCH
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 nation’s 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.
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
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MARCH
Tarah O’Sullivan, 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
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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
