The Mikaere Foundation
Founded in 2017 (previously as the Foundation for Nonketotic Hyperglycinemia), the Mikaere Foundation is a UK-based charity that raise funds for NKH Research, to further the knowledge of and bring about effective treatment options. We also provide information and support to families living with NKH. It’s not an easy path, and because of the rarity of NKH, information can be difficult to come by. We hope to change that.
The Mikaere Foundation is a registered charity in England and Wales, charity number 1200720.
What we do
We have two main goals:
1. Raise funds for research into an effective treatment for Nonketotic Hyerpglycinemia (NKH)
Currently, there is no effective treatment for NKH. We support Prof Nicholas Greene
(a professor of Developmental Neurobiology in the Developmental Biology & Cancer Dept at UCL Great Ormond Street Institute of Child Health) who is currently the lead in progress towards gene replacement therapy and a sodium benzoate alternative.
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. Support families living with Nonketotic Hyerpglycinemia (NKH) in the UK
We support families living with NKH in several ways.
– We provide trusted information via the NKH Information Booklet and via foundationnkh.org, sharing in-depth medical knowledge about Nonketotic Hyerpglycinemia (NKH) for families and for medical professionals who support them.
– We host family meet ups, providing connection, emotional support and a safe space to share struggles, find empathy and reduce isolation for families. It also provides an opportunity for families to pool knowledge and share practical resources/tips for raising a child with NKH.).
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).
