Day 8: NKH Crusaders

Mission Statement: “Our Mission is to raise money for research and treatment for NKH. NKH is a rare metabolic disorder that affects one in every 250,000 births.”

mom-and-thomas-website

What is NKH?

NKH, Non-Ketotic Hyperglycinemia, is a rare incurable metabolic disease that takes the lives of too many children. It is NKH Crusaders’ hope to raise awareness about NKH and raise money for needed research. Most babies born with this disorder die shortly after birth. Before death, they go through a period of lethargy, weak crying, generalized hypotonia, and seizures.

About NKH Crusaders

NKH Crusaders was started by Kristin, mother of NKH victim Thomas, in Massachusetts. Kristin has devoted her life to raising awareness and research funding for NKH!

Fun Fact

Kristin, the president of NKH Crusaders, received the Citizen of the Year award in 2010 for initiating awareness.

What They’ve Done So Far

The NKH Crusaders have raised over $150,000, which gets sent to Dr. VanHove at the University of Colorado. They need to raise 50,000 a year to keep research going.

How You Can Help

You can donate and/or participate in events if you’re a Massachusetts local! Check out their Facebook page for more details.

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