The Mikaere Foundation
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.
The Mikaere Foundation is a registered charity in England and Wales, charity number 1200720.
You can email us at hello@mikaerefoundation.org
What we do
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.
If you are a researcher involved in projects with NKH, and would like to put yourself forward for funding, please fill out a Request for Funds Form and a Due Diligence Form, and return to hello@mikaerefoundation.org to be considered.
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.
About Mikaere
Mikaere was born with Nonketotic Hyperglycinemia in late 2016. His family spent countless weeks in Intensive Care, hospital and hospice on end of life care. He is so well-loved, but living with NKH was not what Sam or Elly expected. They were determined that their little boy would make his mark on this world and wanted to contribute to the NKH community that has supported their little family. Unfortunately Mikaere died in August 2024.
For more information about their story, please visit:
Instagram: @teammikaere
Facebook: facebook.com/teammikaere
Our Annual Reports
Our Annual reports can be found with the Charity Commission, and below.
The Charity Trustees
The Board of Trustees includes:
– Elly Hulance (Chair)
– Sam Hulance
– Wendy Hulance
– Andy Hulance
– Kirsty Lester
– Jamie Irving
– Tony Collins
Thank you for your support!
We can’t do what we do without the regular support of people wanting to make change. Thank you to everyone who regularly supports the Mikaere Foundation. In no particular order, a special thank you to:
Special thanks to our “Hive” members, our regular monthly donors. We’re grateful for your ongoing and continued support. We’d also like to thank: Jack, Sophie and Freya Davies, Stacey Leech. Bex (and Dan) Chaffleson. Tony and Tess Elford. Laura, Moss. Teo and the Sayin/Chown families. Wendy and Andy Hulance, the Parish of the Toddington Methodist Church, and those from Toddington. Penny and Tony Collins. Andrew Gits, Gareth Humphries and Hari Holdsworth. Wirgina and Cara-Grace Chojnowska. Maya and Leo Lewis (and Leo’s Legacy). Kirsty and Jon Lester (remembering Alexander, always).
