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NKH Crusaders works closely with several non-profits who support NKH Research, as well as support for NKH families in need.

The Jack Richard Urban Foundation was established in 2023 by Jack's parents, Joe and Molly (Mattern). The foundation's goal is to raise awareness for Non-ketotic hyperglycinemia (NKH) and to fund raise for a cure. The science is there- the funding is not.

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Brodyn‘s friends is a 501(c)3 charitable organization that gives caring people like you the opportunity to make an immediate difference in the lives of children and families affected with NKH, Nonketotic Hyperglycinemia . All donations are used to fund the research being done to find a cure and better treatment options for this devastating rare disease.

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Lucas John Foundation is a nonprofit organization focused on rare diseases. Lucas John Culp was born in 2018 and medically diagnosed with a very rare genetic condition, Non-ketotic hyperglycinemia (NKH). There are only approximately 500 cases in the world. NKH is considered an orphaned disease. Orphaned diseases do not receive government funding and research is solely funded by the families affected and their supporters.

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The Nora Jane Foundation is an official 501(c)(3) charitable organization. Our foundation is dedicated to providing NKH awareness and promoting fundraising efforts for NKH research.

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Our mission is to help families affected by the NKH disease as well as fund research in hopes of finding a cure.

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Donate Directly to NKH Research Facilities

The Haldar Lab at Boler-Parseghian Center for Rare and Neglected Diseases is working to cure NKH through the use of gene therapy.

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To provide support for research into Nonketotic Hyperglycinemia and related disorders in the Department of Pediatrics at the University of Colorado School of Medicine.

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August 1, 2022 to date NKH Crusaders has donated over 700,000 to NKH Research at the University of Colorado and the University of Notre Dame. Research has moved forward so much in the last few years due to the hard work of the researchers. We are now working hard on creating a NKH Crusaders Patient Registry and hope to launch it in October 2022.

NKH Research Updates

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NKH RAFFLES FOR RESEARCH

Enter to win exciting raffle items, simply using Venmo to purchase.

Raffles for Research

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Make Checks Payable to NKH Crusaders, Mail to:

122 Biscayne Ave

Weymouth, MA 02188

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