Founded in 2022, the Mikaere Foundation is a UK-based charity that supports children with Nonketotic Hyperglycinemia (NKH) – a rare and terminal metabolic disorder. We work towards funding NKH Research, so we can – one day – give children with NKH real futures.
Until then, we support children and families living with NKH through our information and community programmes.
We:
1. Raise funds for research into an effective treatment for Nonketotic Hyerpglycinemia (NKH)
We’ve partnered with teams at UCL in London (who are working on gene therapy treatments), and the University of Colorado (who are working on compound/chaperone treatments). We’re hopeful that one day NKH will have an effective treatment, and will one day no longer be a devastating, life limiting diagnosis.
2. Provide trusted medical information about Nonketotic Hyperglycinemia (NKH)
NKH is not a well known disorder, and finding clear, easily understandable information can be difficult. We provide trusted medical information about NKH to newly diagnosed families and the medical professionals who support them. This information is reviewed by NKH specialists, independently accredited, and meets the requirements of NHS trusts and services for information dissemination.
3. Provide NKH Patient Community Support
Despite being the second most common disorder of amino acid metabolism, because of the sharp death rate, families living with NKH are rare, and spread across the country. We hold community meets up to offer connection, emotional support and provide a safe place to share struggles, find empathy and reduce isolation for families. We also hold safe spaces online.
The work of The Mikaere Foundation matters because children with NKH deserve better. Nonketotic Hyperglycinemia is a rare, life-limiting metabolic disorder. It's devastating. One in three children born with NKH won't see their first birthday, and those that do are likely to be profoundly disabled.
NKH has a genetic cause that interupts the glycine clevage system. The toxic glycine buildup in the brain and central nervous system leads to severe neurological damage, epilepsy, developmental disabilities, and often a signficantly shortened lifespan - and currently, there is no effective treatment. The Mikaere Foundation fills a critical gap by funding essential research (including pioneering gene-therapy work with UCL), providing clear medical information for families and clinicians, creating community support networks to reduce isolation, and raising awareness for a condition that is often overlooked.
In doing so, we offer children with NKH - and their families - support, understanding, and genuine hope for a better future. That matters.