Hope for NKH is a nonprofit corporation formed in the state of Washington at NKH International Family Support Network conferences.
The idea to form a nonprofit has been brought forth by many families over the past 6 years. Not much has changed in the treatment of Non-Ketotic Hyperglycinemia (NKH) in recent years. We are very thankful to the doctors that have shown interest in NKH but to continue to research treatments, prenatal diagnosis, and just to get a better grasp on this disorder and the effects of glycine more money is needed to fund the programs the doctors would like to pursue. In addition more funds are needed to interest new doctors in pursuing research in NKH.
Though there are a couple of organizations that will accept funds on behalf of NKH those
organizations also keep a large portion of it for their own organizations. Since there was
no organization or goals the attempts at fundraising efforts have been limited to raising funds for specific events like family get-togethers, newsletters, or focused on one particular family or child.
So with substantial effort of a few key members of the NKH family we have put together
an organization that has rules, plans and great opportunity to help promote interest and
knowledge of NKH.