Drake Rayden Foundation
is a registered 501(c)3, non profit (ID: 82-2383660) formed by Eric and Tarah O'Sullivan
after their youngest son, Drake Rayden, was diagnosed with an extremely rare, terminal metabolic disease called
Being that NKH is a rare genetic disease, government funding is very limited, so the burden to raise funds for research falls to the families of these medically fragile children. Our mission at the Drake Rayden Foundation is to raise awareness for NKH, fight for
better treatment, and support research that is desperately needed to change the
lives of children living with NKH across the world.
The Drake Rayden Foundation we are fiercely pursuing the most advanced, progressive treatment in the research field for NKH. We regularly meet and speak with all predominant NKH researchers, and continue to fund and be immersed in the emerging science. Click here to see more information about NKH patient treatment, NKH Research in the United States and the United Kingdom, and what we are doing to expedite treatment for children currently suffering with NKH.